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Weinfurt, Kevin Phillip

Overview:

Kevin P. Weinfurt, PhD, is a professor in psychiatry and behavioral sciences at the Duke University School of Medicine. He holds a secondary appointment as a professor of psychology and neuroscience. He is co-director of the Clinical Research Training Program (Masters degree offered through the School of Medicine).

Dr. Weinfurt conducts research on measuring patient-reported outcomes, medical decision making, and bioethics. In addition to conducting research, Dr. Weinfurt has taught undergraduate courses in introductory psychology, judgment and decision making, the psychology of medical decision making; and graduate courses in multivariate statistics and patient-reported outcomes research.


Areas of Expertise: Bioethics, Health Measurement, Health Services Research, and Health Behavior

Positions:

Professor in Population Health Sciences

Population Health Sciences
School of Medicine

Professor in the Department of Psychology and Neuroscience

Psychology and Neuroscience
Trinity College of Arts & Sciences

Affiliate of the Duke Initiative for Science & Society

Duke Science & Society
Institutes and Provost's Academic Units

Membership of the Duke Cancer Institute

Duke Cancer Institute
School of Medicine

Member in the Duke Clinical Research Institute

Duke Clinical Research Institute
School of Medicine

Education:

Ph.D. 1997

Ph.D. — Georgetown University

News:

Grants:

NIH Health Care Systems Research Collaboratory - Coordinating Center

Administered By
Duke Clinical Research Institute
AwardedBy
National Institutes of Health
Role
Co-Principal Investigator
Start Date
September 15, 2017
End Date
August 31, 2022

Dissemination and Implementation Science in Cardiovascular Outcomes (DISCO)

Administered By
Basic Science Departments
AwardedBy
National Institutes of Health
Role
Faculty Member
Start Date
September 01, 2017
End Date
August 31, 2022

Urinary Stone Disease Research Network: Scientific Data Research Center

Administered By
Duke Clinical Research Institute
AwardedBy
National Institutes of Health
Role
Co Investigator
Start Date
September 01, 2016
End Date
August 31, 2021

Health Care Systems Research Collaboratory - Coordinating Center

Administered By
Duke Clinical Research Institute
AwardedBy
National Institutes of Health
Role
PD/PI
Start Date
September 30, 2012
End Date
August 31, 2018

Duke KURe Program

Administered By
Obstetrics and Gynecology, Urogynecology
AwardedBy
National Institutes of Health
Role
Mentor
Start Date
August 01, 2013
End Date
July 31, 2018

Advancing the Measurement and Classification of Lower Urinary Tract Dysfunction

Administered By
Obstetrics and Gynecology, Urogynecology
AwardedBy
National Institutes of Health
Role
Principal Investigator
Start Date
September 30, 2012
End Date
May 31, 2018

Duke CTSA (UL1)

Administered By
Institutes and Centers
AwardedBy
National Institutes of Health
Role
Co Investigator
Start Date
September 26, 2013
End Date
April 30, 2018

Stopping Tyrosine Kinase Inhibitors in CML Patients (Stop-TKIs)

Administered By
Medicine, Hematologic Malignancies and Cellular Therapy
AwardedBy
Medical College of Wisconsin
Role
Co-Principal Investigator
Start Date
September 19, 2014
End Date
August 31, 2017

Health Care Systems Research Collaboratory -Empirical Ethics Supplement

Administered By
Duke Clinical & Translational Science Institute
AwardedBy
National Institutes of Health
Role
Co Investigator
Start Date
September 30, 2012
End Date
August 31, 2017

ENHANCING THE BIOBANKING INFORMED CONSENT PROCESS TO IMPROVE COMPREHENSION

Administered By
Basic Science Departments
AwardedBy
National Institutes of Health
Role
Principal Investigator
Start Date
August 14, 2012
End Date
June 19, 2017

Symptoms of Lower Urinary Tract Dysfunction Research Network (U01) Supplement

Administered By
Duke Clinical Research Institute
AwardedBy
National Institutes of Health
Role
Principal Investigator
Start Date
September 30, 2012
End Date
May 31, 2017

Li Lin support from MCW

Administered By
Duke Clinical Research Institute
AwardedBy
Medical College of Wisconsin
Role
Principal Investigator
Start Date
October 01, 2015
End Date
September 30, 2016

Validating and Extending the PROMIS Sexual Function Measure for Clinical Research

Administered By
Duke Clinical Research Institute
AwardedBy
National Institutes of Health
Role
Principal Investigator
Start Date
September 30, 2009
End Date
July 31, 2015

PREMIS: Preventive Misconception in HIV Prevention Trials

Administered By
Duke Clinical Research Institute
AwardedBy
National Institutes of Health
Role
Principal Investigator
Start Date
July 01, 2010
End Date
April 30, 2014

Assessing the Use and Understanding of Certificates of Confidentiality

Administered By
Duke Clinical Research Institute
AwardedBy
National Institutes of Health
Role
Co Investigator
Start Date
May 28, 2010
End Date
February 28, 2013

CTSA UL

Administered By
Institutes and Centers
AwardedBy
National Institutes of Health
Role
Investigator
Start Date
September 30, 2006
End Date
September 01, 2012

Understanding Patient Expectations of Treatment Outcomes

Administered By
Duke Clinical Research Institute
AwardedBy
National Institutes of Health
Role
Principal Investigator
Start Date
June 08, 2009
End Date
November 30, 2011

PROMIS

Administered By
Duke Clinical Research Institute
AwardedBy
National Institutes of Health
Role
Principal Investigator
Start Date
September 28, 2004
End Date
September 29, 2009

Mammography Pain in Breast Cancer Survivors

Administered By
Psychiatry & Behavioral Sciences, Behavioral Medicine
AwardedBy
National Institutes of Health
Role
Co-Sponsor
Start Date
September 04, 2006
End Date
September 03, 2009

ACTION EQOL STUDY

Administered By
Duke Clinical Research Institute
AwardedBy
National Institutes of Health
Role
Co Investigator
Start Date
September 30, 2002
End Date
December 31, 2008

CSP 442 - #1416

Administered By
Duke Clinical Research Institute
AwardedBy
Department of Veterans Affairs
Role
Fiscal Specialist
Start Date
April 25, 2000
End Date
March 31, 2005
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Publications:

Comparison of Approaches for Notification and Authorization in Pragmatic Clinical Research Evaluating Commonly Used Medical Practices.

For pragmatic clinical research comparing commonly used treatments, questions exist about if and how to notify participants about it and secure their authorization for participation.To determine how patients react when they seek clinical care and encounter one of several different pragmatic clinical research studies.In an online survey using a between-subjects experimental design, respondents read and responded to 1 of 24 hypothetical research scenarios reflecting different types of studies and approaches to notification and authorization (eg, general notification, oral consent, written consent).English-speaking US adults 18 years and older.Willingness to participate in the hypothetical study, acceptability of the notification and authorization approach, understanding of the study, perceptions of benefit/harm, trust, and perception of amount of study information received.Willingness to participate did not differ by notification and authorization approach. Some (21%-36%) of the patients randomized to general notification with an explicit opt-out provision were not aware they would be enrolled by default. Acceptability was greatest for and similar among notification and authorization approaches that actively engaged the patient (eg, oral or written consent) and lower for approaches with less engagement (eg, general notification). Problems of understanding were found among 20%-55% of respondents, depending on the particular scenario. Most respondents (77%-94%) felt that participation in the hypothetical study posed no risks of harm to their health or privacy.Current attitudes about notification and authorization approaches and difficulties understanding pragmatic clinical research pose significant challenges for pragmatic research. Data from this study provide a starting point to developing solutions to these surprisingly complex issues.

Authors
Weinfurt, KP; Bollinger, JM; Brelsford, KM; Bresciani, M; Lampron, Z; Lin, L; Topazian, RJ; Sugarman, J
MLA Citation
Weinfurt, KP, Bollinger, JM, Brelsford, KM, Bresciani, M, Lampron, Z, Lin, L, Topazian, RJ, and Sugarman, J. "Comparison of Approaches for Notification and Authorization in Pragmatic Clinical Research Evaluating Commonly Used Medical Practices. (Accepted)" Medical care 55.11 (November 2017): 970-978.
PMID
28650924
Source
epmc
Published In
Medical Care
Volume
55
Issue
11
Publish Date
2017
Start Page
970
End Page
978
DOI
10.1097/mlr.0000000000000762

Patients' Conceptions of Terms Related to Sexual Interest, Desire, and Arousal.

Measurement of sexual function typically uses self-report, which, to work as intended, must use language that is understood consistently by diverse respondents. Commonly used measures employ multiple terms, primarily (sexual) interest, desire, and arousal, that might not be understood in the same way by laypeople and professionals.To inform self-reported measurement efforts for research and clinical settings by examining how US men and women recruited from a health care setting understand and interpret different terms.We conducted 10 focus groups in Durham, NC (N = 57). Discussions were audio-recorded and transcribed, and the content of the discussions was systematically analyzed in 2 phases of coding by the research team, facilitated by Nvivo qualitative analysis software (QSR International, Doncaster, VIC, Australia).Patient focus group discussions about the meanings and connotations of multiple terms related to sexual function, especially interest, desire, and arousal.5 groups included male participants and 5 included female participants. Participants characterized (sexual) interest as a cognitive phenomenon and a situational response to a specific person. Similarly, they characterized (sexual) desire as a situational person-specific experience with some support for it as a cognitive phenomenon but more support for it as a physical phenomenon. In contrast, participants characterized sexual arousal as a physical phenomenon occurring in response to physical or visual stimulation and not related to a specific person.These results can help us understand how laypeople are using and responding to these terms when they are used in clinical and research settings.Patient participants in these groups were diverse in age, gender, sexual orientation, and health, with the potential to voice diverse perspectives on sexual functioning; however, the sample was limited to a single city in the southeastern United States.The meanings of interest, desire, and arousal were defined, compared, and contrasted in the context of patient focus groups. Qualitative coding showed that interest was considered the most "cognitive," arousal the most "physical," and desire somewhere in between. DeLamater JD, Weinfurt KP, Flynn KE. Patients' Conceptions of Terms Related to Sexual Interest, Desire, and Arousal. J Sex Med 2017;XX:XXX-XXX.

Authors
DeLamater, JD; Weinfurt, KP; Flynn, KE
MLA Citation
DeLamater, JD, Weinfurt, KP, and Flynn, KE. "Patients' Conceptions of Terms Related to Sexual Interest, Desire, and Arousal." The journal of sexual medicine (October 7, 2017).
PMID
29017897
Source
epmc
Published In
The Journal of Sexual Medicine
Publish Date
2017
DOI
10.1016/j.jsxm.2017.09.009

Pragmatic clinical trials embedded in healthcare systems: generalizable lessons from the NIH Collaboratory.

The clinical research enterprise is not producing the evidence decision makers arguably need in a timely and cost effective manner; research currently involves the use of labor-intensive parallel systems that are separate from clinical care. The emergence of pragmatic clinical trials (PCTs) poses a possible solution: these large-scale trials are embedded within routine clinical care and often involve cluster randomization of hospitals, clinics, primary care providers, etc. Interventions can be implemented by health system personnel through usual communication channels and quality improvement infrastructure, and data collected as part of routine clinical care. However, experience with these trials is nascent and best practices regarding design operational, analytic, and reporting methodologies are undeveloped.To strengthen the national capacity to implement cost-effective, large-scale PCTs, the Common Fund of the National Institutes of Health created the Health Care Systems Research Collaboratory (Collaboratory) to support the design, execution, and dissemination of a series of demonstration projects using a pragmatic research design.In this article, we will describe the Collaboratory, highlight some of the challenges encountered and solutions developed thus far, and discuss remaining barriers and opportunities for large-scale evidence generation using PCTs.A planning phase is critical, and even with careful planning, new challenges arise during execution; comparisons between arms can be complicated by unanticipated changes. Early and ongoing engagement with both health care system leaders and front-line clinicians is critical for success. There is also marked uncertainty when applying existing ethical and regulatory frameworks to PCTS, and using existing electronic health records for data capture adds complexity.

Authors
Weinfurt, KP; Hernandez, AF; Coronado, GD; DeBar, LL; Dember, LM; Green, BB; Heagerty, PJ; Huang, SS; James, KT; Jarvik, JG; Larson, EB; Mor, V; Platt, R; Rosenthal, GE; Septimus, EJ; Simon, GE; Staman, KL; Sugarman, J; Vazquez, M; Zatzick, D; Curtis, LH
MLA Citation
Weinfurt, KP, Hernandez, AF, Coronado, GD, DeBar, LL, Dember, LM, Green, BB, Heagerty, PJ, Huang, SS, James, KT, Jarvik, JG, Larson, EB, Mor, V, Platt, R, Rosenthal, GE, Septimus, EJ, Simon, GE, Staman, KL, Sugarman, J, Vazquez, M, Zatzick, D, and Curtis, LH. "Pragmatic clinical trials embedded in healthcare systems: generalizable lessons from the NIH Collaboratory." BMC medical research methodology 17.1 (September 18, 2017): 144-.
PMID
28923013
Source
epmc
Published In
BMC Medical Research Methodology
Volume
17
Issue
1
Publish Date
2017
Start Page
144
DOI
10.1186/s12874-017-0420-7

Improving biobank consent comprehension: a national randomized survey to assess the effect of a simplified form and review/retest intervention.

To determine the individual and combined effects of a simplified form and a review/retest intervention on biobanking consent comprehension.We conducted a national online survey in which participants were randomized within four educational strata to review a simplified or traditional consent form. Participants then completed a comprehension quiz; for each item answered incorrectly, they reviewed the corresponding consent form section and answered another quiz item on that topic.Consistent with our first hypothesis, comprehension among those who received the simplified form was not inferior to that among those who received the traditional form. Contrary to expectations, receipt of the simplified form did not result in significantly better comprehension compared with the traditional form among those in the lowest educational group. The review/retest procedure significantly improved quiz scores in every combination of consent form and education level. Although improved, comprehension remained a challenge in the lowest-education group. Higher quiz scores were significantly associated with willingness to participate.Ensuring consent comprehension remains a challenge, but simplified forms have virtues independent of their impact on understanding. A review/retest intervention may have a significant effect, but assessing comprehension raises complex questions about setting thresholds for understanding and consequences of not meeting them.Genet Med advance online publication 13 October 2016.

Authors
Beskow, LM; Lin, L; Dombeck, CB; Gao, E; Weinfurt, KP
MLA Citation
Beskow, LM, Lin, L, Dombeck, CB, Gao, E, and Weinfurt, KP. "Improving biobank consent comprehension: a national randomized survey to assess the effect of a simplified form and review/retest intervention." Genetics in medicine : official journal of the American College of Medical Genetics 19.5 (May 2017): 505-512.
PMID
27735922
Source
epmc
Published In
Genetics in Medicine
Volume
19
Issue
5
Publish Date
2017
Start Page
505
End Page
512
DOI
10.1038/gim.2016.157

Assessment of vulvar discomfort with sexual activity among women in the United States.

Multidimensional self-report measures of sexual function for women do not include the assessment of vulvar discomfort, limiting our understanding of its prevalence. In an effort to improve the measurement of patient-reported health, the National Institutes of Health funded the creation of the Patient Reported Outcomes Measurement Information System (PROMIS). This included the development of the PROMIS Sexual Function and Satisfaction measure, and version 2.0 of the Sexual Function and Satisfaction measure included 2 scales to measure vulvar discomfort with sexual activity.The objectives of the study were to describe the development of 2 self-reported measures of vulvar discomfort with sexual activity, describe the relationships between these scales and scales for lubrication and vaginal discomfort, and report the prevalence of vulvar discomfort with sexual activity in a large, nationally representative sample of US women.We followed PROMIS measure development standards, including qualitative development work with patients and clinicians and psychometric evaluation of candidate items based on item response theory, in a probability sample of 1686 English-speaking US adult women. We tested 16 candidate items on vulvar discomfort. We present descriptive statistics for these items, correlation coefficients among the vulvar and vaginal scales, and mean PROMIS scores with 95% confidence intervals separately by menopausal status for the 1046 women who reported sexual activity in the past 30 days.Based on the psychometric evaluation of the candidate items, we created 2 separate 4 item scales, one to measure labial discomfort and pain and one to measure clitoral discomfort and pain. Additional items not included in the scales assess pain quality, numbness, and bleeding. The correlations between the lubrication, vaginal discomfort, and the 2 vulvar discomfort measures ranged from 0.46 to 0.77, suggesting that these measures represent related yet distinct concepts. In our nationally representative sample, 1 in 5 US women endorsed some degree of vulvar discomfort with sexual activity in the past 30 days. Menopausal status was associated with lower lubrication and higher vaginal discomfort but not with vulvar discomfort.The PROMIS Vulvar Discomfort with Sexual Activity-Labial and Vulvar Discomfort with Sexual Activity-Clitoral scales are publicly available for use in research and clinical settings. There is limited overlap between vulvar discomfort and lubrication or vaginal discomfort. The importance of measuring vulvar discomfort as part of a comprehensive assessment of sexual function is underscored by its prevalence.

Authors
Flynn, KE; Carter, J; Lin, L; Lindau, ST; Jeffery, DD; Reese, JB; Schlosser, BJ; Weinfurt, KP
MLA Citation
Flynn, KE, Carter, J, Lin, L, Lindau, ST, Jeffery, DD, Reese, JB, Schlosser, BJ, and Weinfurt, KP. "Assessment of vulvar discomfort with sexual activity among women in the United States." American journal of obstetrics and gynecology 216.4 (April 2017): 391.e1-391.e8.
PMID
27988269
Source
epmc
Published In
American Journal of Obstetrics & Gynecology
Volume
216
Issue
4
Publish Date
2017
Start Page
391.e1
End Page
391.e8
DOI
10.1016/j.ajog.2016.12.006

Sexual function and satisfaction among heterosexual and sexual minority U.S. adults: A cross-sectional survey.

Despite known health disparities for sexual minorities, few studies have described sexual function by sexual orientation using a robust approach to measurement of sexual function. We compared recent sexual function and satisfaction by sexual orientation among English-speaking US adults.Cross-sectional surveys were administered by KnowledgePanel® (GfK), an online panel that uses address-based probability sampling and is representative of the civilian, noninstitutionalized US population. Data were collected in 2013 from the general population (n = 3314, 35% response rate) and in 2014 from self-identified lesbian, gay, and bisexual adults (n = 1011, 50% response rate). Sexual function and satisfaction were measured using the Patient-Reported Outcomes Measurement Information System® Sexual Function and Satisfaction measure version 2.0 (PROMIS SexFS v2). The PROMIS SexFS v2 is a comprehensive, customizable measurement system with evidence for validity in diverse populations. A score of 50 (SD 10) on each domain corresponds to the average for US adults sexually active in the past 30 days. We adjusted all statistics for the complex sample designs and report differences within each sex where the 95% CIs do not overlap, corresponding to p<0.01. Among US men who reported any sexual activity in the past 30 days, there were no differences in erectile function or orgasm-ability. Compared to heterosexual men, sexual minority men reported higher oral dryness and lower orgasm-pleasure and satisfaction. Compared to heterosexual men, gay men reported lower interest, higher anal discomfort and higher oral discomfort. Among sexually active women, there were no differences in the domains of vulvar discomfort-clitoral, orgasm-pleasure, or satisfaction. Compared to heterosexual women, sexual minority women reported higher oral dryness. Lesbian women reported lower vaginal discomfort than other women; lesbian women reported higher lubrication and orgasm-ability than heterosexual women. Bisexual women reported higher interest, higher vulvar discomfort-labial and higher anal discomfort than other women, as well as higher oral discomfort compared to heterosexual women.Recent sexual function and satisfaction differed by sexual orientation among US adults. Sexual minority men and women had decrements in domains of sexual function that have not traditionally been included in multi-dimensional self-report measures. Clinicians should make themselves aware of their patients' sexual concerns and recognize that sexual minority patients may be more vulnerable to certain sexual difficulties than heterosexual patients.

Authors
Flynn, KE; Lin, L; Weinfurt, KP
MLA Citation
Flynn, KE, Lin, L, and Weinfurt, KP. "Sexual function and satisfaction among heterosexual and sexual minority U.S. adults: A cross-sectional survey." PloS one 12.4 (January 2017): e0174981-.
Website
http://hdl.handle.net/10161/14245
PMID
28403193
Source
epmc
Published In
PloS one
Volume
12
Issue
4
Publish Date
2017
Start Page
e0174981
DOI
10.1371/journal.pone.0174981

Sexual Satisfaction and the Importance of Sexual Health to Quality of Life Throughout the Life Course of U.S. Adults.

Discussions about sexual health are uncommon in clinical encounters, despite the sexual dysfunction associated with many common health conditions. Understanding of the importance of sexual health and sexual satisfaction in U.S. adults is limited.To provide epidemiologic data on the importance of sexual health for quality of life and people's satisfaction with their sex lives and to examine how each is associated with demographic and health factors.Data are from a cross-sectional self-report questionnaire from a sample of 3,515 English-speaking U.S. adults recruited from an online panel that uses address-based probability sampling.We report ratings of importance of sexual health to quality of life (single item with five-point response) and the Patient-Reported Outcomes Measurement Information System Satisfaction With Sex Life score (five items, each with five-point responses, scores centered on the U.S. mean).High importance of sexual health to quality of life was reported by 62.2% of men (95% CI = 59.4-65.0) and 42.8% of women (95% CI = 39.6-46.1, P < .001). Importance of sexual health varied by sex, age, sexual activity status, and general self-rated health. For the 55% of men and 45% of women who reported sexual activity in the previous 30 days, satisfaction with sex life differed by sex, age, race-ethnicity (among men only), and health. Men and women in excellent health had significantly higher satisfaction than participants in fair or poor health. Women with hypertension reported significantly lower satisfaction (especially younger women), as did men with depression or anxiety (especially younger men).In this large study of U.S. adults' ratings of the importance of sexual health and satisfaction with sex life, sexual health was a highly important aspect of quality of life for many participants, including participants in poor health. Moreover, participants in poorer health reported lower sexual satisfaction. Accordingly, sexual health should be a routine part of clinicians' assessments of their patients. Health care systems that state a commitment to improving patients' overall health must have resources in place to address sexual concerns. These resources should be available for all patients across the lifespan.

Authors
Flynn, KE; Lin, L; Bruner, DW; Cyranowski, JM; Hahn, EA; Jeffery, DD; Reese, JB; Reeve, BB; Shelby, RA; Weinfurt, KP
MLA Citation
Flynn, KE, Lin, L, Bruner, DW, Cyranowski, JM, Hahn, EA, Jeffery, DD, Reese, JB, Reeve, BB, Shelby, RA, and Weinfurt, KP. "Sexual Satisfaction and the Importance of Sexual Health to Quality of Life Throughout the Life Course of U.S. Adults." The journal of sexual medicine 13.11 (November 2016): 1642-1650.
PMID
27671968
Source
epmc
Published In
The Journal of Sexual Medicine
Volume
13
Issue
11
Publish Date
2016
Start Page
1642
End Page
1650
DOI
10.1016/j.jsxm.2016.08.011

Physicians' perspectives regarding pragmatic clinical trials.

Practicing physicians inevitably become involved in pragmatic clinical trials (PCTs), including comparative effectiveness research. We sought to identify physicians' perspectives related to PCTs.In-depth semistructured interviews with 20 physicians in the USA.Although physicians are generally willing to participate in PCTs, their support is predicated on several factors including expected benefits, minimization of time and workflow burdens and physician engagement. Physicians communicated a desire to respect patients' rights and interests while maintaining a high level of care.Future work is needed to systematically assess the impact of PCTs on clinicians in meeting their ethical obligations to patients and the burdens clinicians are willing to accept in exchange for potential benefits.

Authors
Topazian, R; Bollinger, J; Weinfurt, KP; Dvoskin, R; Mathews, D; Brelsford, K; DeCamp, M; Sugarman, J
MLA Citation
Topazian, R, Bollinger, J, Weinfurt, KP, Dvoskin, R, Mathews, D, Brelsford, K, DeCamp, M, and Sugarman, J. "Physicians' perspectives regarding pragmatic clinical trials." Journal of comparative effectiveness research 5.5 (August 2016): 499-506.
PMID
27417953
Source
epmc
Published In
Journal of Comparative Effectiveness Research
Volume
5
Issue
5
Publish Date
2016
Start Page
499
End Page
506
DOI
10.2217/cer-2016-0024

Symptoms of Lower Urinary Tract Dysfunction Research Network.

To address gaps in understanding and treating lower urinary tract symptoms, the NIDDK created the Symptoms of Lower Urinary Tract Dysfunction Research Network (LURN). The goals of LURN are to work collaboratively to 1) identify and explain the important subtypes of lower urinary tract symptoms; 2) improve the measurement of patient experiences of lower urinary tract symptoms; 3) disseminate novel findings to researchers, clinicians and patients; and 4) generate data, research tools and biological samples for future studies.As a first step in understanding subtypes of lower urinary tract symptoms, LURN will focus on disorders of urinary sensation (eg urgency) and their causes. These are being examined with respect to patient experience, organism or systemic factors, genitourinary organs and tissues, and cellular/molecular factors. This is being achieved via an observational cohort study that is currently enrolling patients with lower urinary tract symptoms (target number 1,000) and that will extensively characterize patients with lower urinary tract symptoms. Future studies embedded within the observational cohort study will focus on neuroimaging and sensory testing, biomarkers and organ based factors. To advance the science of measurement of lower urinary tract symptoms, LURN is also developing and evaluating a comprehensive set of self-report questions to provide more granular assessments of lower urinary tract symptoms.LURN has taken its first steps by developing a framework for studying lower urinary tract symptom subtypes.In developing this framework, LURN is choosing an initial domain on which to focus (sensory experiences), and creating and executing protocols designed to improve measurement of self-reported symptoms and identify patient subtypes.

Authors
Yang, CC; Weinfurt, KP; Merion, RM; Kirkali, Z; LURN Study Group,
MLA Citation
Yang, CC, Weinfurt, KP, Merion, RM, Kirkali, Z, and LURN Study Group, . "Symptoms of Lower Urinary Tract Dysfunction Research Network." The Journal of urology 196.1 (July 2016): 146-152.
PMID
26784646
Source
epmc
Published In
The Journal of Urology
Volume
196
Issue
1
Publish Date
2016
Start Page
146
End Page
152
DOI
10.1016/j.juro.2016.01.007

PROMIS measures of pain, fatigue, negative affect, physical function, and social function demonstrated clinical validity across a range of chronic conditions.

To present an overview of a series of studies in which the clinical validity of the National Institutes of Health's Patient Reported Outcome Measurement Information System (NIH; PROMIS) measures was evaluated, by domain, across six clinical populations.Approximately 1,500 individuals at baseline and 1,300 at follow-up completed PROMIS measures. The analyses reported in this issue were conducted post hoc, pooling data across six previous studies, and accommodating the different designs of the six, within-condition, parent studies. Changes in T-scores, standardized response means, and effect sizes were calculated in each study. When a parent study design allowed, known groups validity was calculated using a linear mixed model.The results provide substantial support for the clinical validity of nine PROMIS measures in a range of chronic conditions.The cross-condition focus of the analyses provided a unique and multifaceted perspective on how PROMIS measures function in "real-world" clinical settings and provides external anchors that can support comparative effectiveness research. The current body of clinical validity evidence for the nine PROMIS measures indicates the success of NIH PROMIS in developing measures that are effective across a range of chronic conditions.

Authors
Cook, KF; Jensen, SE; Schalet, BD; Beaumont, JL; Amtmann, D; Czajkowski, S; Dewalt, DA; Fries, JF; Pilkonis, PA; Reeve, BB; Stone, AA; Weinfurt, KP; Cella, D
MLA Citation
Cook, KF, Jensen, SE, Schalet, BD, Beaumont, JL, Amtmann, D, Czajkowski, S, Dewalt, DA, Fries, JF, Pilkonis, PA, Reeve, BB, Stone, AA, Weinfurt, KP, and Cella, D. "PROMIS measures of pain, fatigue, negative affect, physical function, and social function demonstrated clinical validity across a range of chronic conditions." Journal of clinical epidemiology 73 (May 2016): 89-102.
PMID
26952842
Source
epmc
Published In
Journal of Clinical Epidemiology
Volume
73
Publish Date
2016
Start Page
89
End Page
102
DOI
10.1016/j.jclinepi.2015.08.038

Using Cognitive Interviews to Enhance Measurement in Empirical Bioethics: Developing a Measure of the Preventive Misconception in Biomedical HIV Prevention Trials.

We describe our use of cognitive interviews in developing a measure of "preventive misconception" to demonstrate the importance of this approach to researchers developing surveys in empirical bioethics. The preventive misconception involves research participants' false beliefs about a prevention trial, including beliefs that the interventions being tested will certainly be effective.We developed and refined a measure of the preventive misconception using qualitative interviews that focused on cognitive testing of proposed survey items with HIV prevention trial participants.Two main problems emerged during initial interviews. First, the phrase "reduce your risk," used to elicit beliefs about risk reduction from the use of study medications, was interpreted as relating to a reduction of risky behaviors. Second, the phrase "participating in this study," intended to elicit beliefs about trial group assignment, was interpreted as relating to personal behavior changes associated with study participation. Additional interviews using a revised measure were no longer problematic in these ways, and participants felt the response options were appropriate for conveying their answers.These findings underscore the importance of cognitive testing in developing surveys for empirical bioethics.

Authors
Sugarman, J; Seils, DM; Watson-Ormond, JK; Weinfurt, KP
MLA Citation
Sugarman, J, Seils, DM, Watson-Ormond, JK, and Weinfurt, KP. "Using Cognitive Interviews to Enhance Measurement in Empirical Bioethics: Developing a Measure of the Preventive Misconception in Biomedical HIV Prevention Trials." AJOB empirical bioethics 7.1 (January 2016): 17-23.
PMID
27747258
Source
epmc
Published In
Ajob Empirical Bioethics
Volume
7
Issue
1
Publish Date
2016
Start Page
17
End Page
23
DOI
10.1080/23294515.2015.1037967

Patients' Views Concerning Research on Medical Practices: Implications for Consent.

Comparative effectiveness research (CER) and pragmatic clinical trials commonly test interventions that are in routine use and pose minimal incremental risk or burdens to patients who participate in this research. The objective of this study was to elicit the range of patients' views and opinions regarding a variety of different types of research on usual medical practices, especially notification and authorization for them.We conducted twelve focus groups with adults in five U.S. cities-six focus groups addressing CER ("CER groups") and six groups addressing research involving hospital operations and clinician interventions ("Operations groups"). Participants discussed hypothetical research studies and potential methods of notifying patients and obtaining their authorization to participate. Group discussions were recorded, transcribed, and coded to identify patients' views related to research on standard medical practice.A total of ninety six people participated. Twelve key themes emerged from participants' discussions of the hypothetical research studies; these themes were then grouped into four general categories: clinical care; notification and authorization; communication; and conduct and design of research. The desire to be actively notified and asked was more prominent with regard to CER studies than with regard to Operations studies.Our data suggest that effective policy and guidance will involve balancing different patients' interests and potentially different sets of interests for different types of research studies on usual medical practices.

Authors
Weinfurt, KP; Bollinger, JM; Brelsford, KM; Crayton, TJ; Topazian, RJ; Kass, NE; Beskow, LM; Sugarman, J
MLA Citation
Weinfurt, KP, Bollinger, JM, Brelsford, KM, Crayton, TJ, Topazian, RJ, Kass, NE, Beskow, LM, and Sugarman, J. "Patients' Views Concerning Research on Medical Practices: Implications for Consent." AJOB empirical bioethics 7.2 (January 2016): 76-91.
PMID
27800531
Source
epmc
Published In
Ajob Empirical Bioethics
Volume
7
Issue
2
Publish Date
2016
Start Page
76
End Page
91
DOI
10.1080/23294515.2015.1117536

Reliability and construct validity of PROMIS® measures for patients with heart failure who undergo heart transplant.

To evaluate the reliability and construct validity of measures from the Patient-Reported Outcomes Measurement Information System(®) (PROMIS(®)) for patients with heart failure before and after heart transplantation.We assessed reliability of the PROMIS short forms using Cronbach's alpha and the average marginal reliability. To assess the construct validity of PROMIS computerized adaptive tests and short-form measures, we calculated Pearson product moment correlations between PROMIS measures of physical function, fatigue, depression, and social function and existing PRO measures of similar domains (i.e., convergent validity) as well as different domains (i.e., discriminate validity) in patients with heart failure awaiting heart transplant. We evaluated the responsiveness of these measures to change after heart transplant using effect sizes.Forty-eight patients were included in the analyses. Across the many domains examined, correlations between conceptually similar domains were larger than correlations between different domains of health, demonstrating construct validity. Health status improved substantially after heart transplant (standardized effect sizes, 0.63-1.24), demonstrating the responsiveness of the PROMIS measures. Scores from the computerized adaptive tests and the short forms were similar.This study provides evidence for the reliability and construct validity (including responsiveness to change) of four PROMIS domains in patients with heart failure before and after heart transplant. PROMIS measures are a reasonable choice in this context and will facilitate comparisons across studies and health conditions.

Authors
Flynn, KE; Dew, MA; Lin, L; Fawzy, M; Graham, FL; Hahn, EA; Hays, RD; Kormos, RL; Liu, H; McNulty, M; Weinfurt, KP
MLA Citation
Flynn, KE, Dew, MA, Lin, L, Fawzy, M, Graham, FL, Hahn, EA, Hays, RD, Kormos, RL, Liu, H, McNulty, M, and Weinfurt, KP. "Reliability and construct validity of PROMIS® measures for patients with heart failure who undergo heart transplant." Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation 24.11 (November 2015): 2591-2599.
PMID
26038213
Source
epmc
Published In
Quality of Life Research
Volume
24
Issue
11
Publish Date
2015
Start Page
2591
End Page
2599
DOI
10.1007/s11136-015-1010-y

Development and Validation of a Single-Item Screener for Self-Reporting Sexual Problems in U.S. Adults.

Brief self-assessment of sexual problems in a clinical context has the potential to improve care for patients through the ability to track trends in sexual problems over time and facilitate patient-provider communication about this important topic. However, instruments designed for research are typically too long to be practical in clinical practice.To develop and validate a single-item self-report clinical screener that would capture common sexual problems and concerns for men and women.We created three candidate screener items, refined them through cognitive interviews, and administered them to a large sample. We compared the prevalence of responses to each item and explored the discrepancies between items. We evaluated the construct validity of the items by comparing them to scores on the Patient-Reported Outcomes Measurement Information System® Sexual Function and Satisfaction (PROMIS® SexFS) measure.Local patients participated in two rounds of cognitive interviews (n = 7 and n = 11). A probability-based random sample of U.S. adults comprised the item-testing sample (n = 3517).The items were as follows: 1) a yes/no item on any sexual problems or concerns ("general screener"), 2) a yes/no item on problems experienced for 3 months or more during the past 12 months, with a list of examples ("long list screener"), and 3) an item identical to the long list screener except that examples appeared individually as response options and respondents could check all that applied ("checklist screener").All of the screeners tested showed evidence for basic validity and had minimal missing data. Percentages of women and men endorsing the screeners were 10 % and 15 % (general); 20 % and 17 % (long list); and 38 % and 30 % (checklist), respectively. Participants who endorsed the screeners had lower function compared to those who did not endorse them.We recommend the checklist screener for its specificity and ability to identify specific problems associated with decreased sexual function.

Authors
Flynn, KE; Lindau, ST; Lin, L; Reese, JB; Jeffery, DD; Carter, J; Baron, SR; Abramsohn, E; Weinfurt, KP
MLA Citation
Flynn, KE, Lindau, ST, Lin, L, Reese, JB, Jeffery, DD, Carter, J, Baron, SR, Abramsohn, E, and Weinfurt, KP. "Development and Validation of a Single-Item Screener for Self-Reporting Sexual Problems in U.S. Adults." Journal of General Internal Medicine 30.10 (October 2015): 1468-1475.
PMID
25893421
Source
epmc
Published In
Journal of General Internal Medicine
Volume
30
Issue
10
Publish Date
2015
Start Page
1468
End Page
1475
DOI
10.1007/s11606-015-3333-3

Use of altered informed consent in pragmatic clinical research.

There are situations in which the requirement to obtain conventional written informed consent can impose significant or even insurmountable barriers to conducting pragmatic clinical research, including some comparative effectiveness studies and cluster-randomized trials. Although certain federal regulations governing research in the United States (45 CFR 46) define circumstances in which any of the required elements may be waived, the same standards apply regardless of whether any single element is to be waived or whether consent is to be waived in its entirety. Using the same threshold for a partial or complete waiver limits the options available to institutional review boards as they seek to optimize a consent process. In this article, we argue that new standards are necessary in order to enable important pragmatic clinical research while at the same time protecting patients' rights and interests.

Authors
McKinney, RE; Beskow, LM; Ford, DE; Lantos, JD; McCall, J; Patrick-Lake, B; Pletcher, MJ; Rath, B; Schmidt, H; Weinfurt, K
MLA Citation
McKinney, RE, Beskow, LM, Ford, DE, Lantos, JD, McCall, J, Patrick-Lake, B, Pletcher, MJ, Rath, B, Schmidt, H, and Weinfurt, K. "Use of altered informed consent in pragmatic clinical research." Clinical trials (London, England) 12.5 (October 2015): 494-502.
PMID
26374677
Source
epmc
Published In
Clinical Trials
Volume
12
Issue
5
Publish Date
2015
Start Page
494
End Page
502
DOI
10.1177/1740774515597688

Development and Initial Validation of the PROMIS(®) Sexual Function and Satisfaction Measures Version 2.0.

The Patient-Reported Outcomes Measurement Information System (PROMIS)(®) Sexual Function and Satisfaction measure (SexFS) version 1.0 was developed with cancer populations. There is a need to expand the SexFS and provide evidence of its validity in diverse populations.The aim of this study was to describe the development of the SexFS v2.0 and present preliminary evidence for its validity.Development built on version 1.0, plus additional review of extant items, discussions with 15 clinical experts, 11 patient focus groups (including individuals with diabetes, heart disease, anxiety, depression, and/or are lesbian, gay, bisexual, or aged 65 or older), 48 cognitive interviews, and psychometric evaluation in a random sample of U.S. adults plus an oversample for specific sexual problems (2281 men, 1686 women). We examined differential item functioning (DIF) by gender and sexual activity. We examined convergent and known-groups validity.The final set of domains includes 11 scored scales (interest in sexual activity, lubrication, vaginal discomfort, clitoral discomfort, labial discomfort, erectile function, orgasm ability, orgasm pleasure, oral dryness, oral discomfort, satisfaction), and six nonscored item pools (screeners, sexual activities, anal discomfort, therapeutic aids, factors interfering with sexual satisfaction, bother). Domains from version 1.0 were reevaluated and improved. Domains considered applicable across gender and sexual activity status, namely interest, orgasm, and satisfaction, were found to have significant DIF. We identified subsets of items in each domain that provided consistent measurement across these important respondent groups. Convergent and known-groups validity was supported.The SexFS version 2.0 has several improvements and enhancements over version 1.0 and other extant measures, including expanded evidence for validity, scores centered around norms for sexually active U.S. adults, new domains, and a final set of items applicable for both men and women and those sexually active with a partner and without. The SexFS is customizable, allowing users to select relevant domains and items for their study.

Authors
Weinfurt, KP; Lin, L; Bruner, DW; Cyranowski, JM; Dombeck, CB; Hahn, EA; Jeffery, DD; Luecht, RM; Magasi, S; Porter, LS; Reese, JB; Reeve, BB; Shelby, RA; Smith, AW; Willse, JT; Flynn, KE
MLA Citation
Weinfurt, KP, Lin, L, Bruner, DW, Cyranowski, JM, Dombeck, CB, Hahn, EA, Jeffery, DD, Luecht, RM, Magasi, S, Porter, LS, Reese, JB, Reeve, BB, Shelby, RA, Smith, AW, Willse, JT, and Flynn, KE. "Development and Initial Validation of the PROMIS(®) Sexual Function and Satisfaction Measures Version 2.0." The journal of sexual medicine 12.9 (September 7, 2015): 1961-1974.
PMID
26346418
Source
epmc
Published In
The Journal of Sexual Medicine
Volume
12
Issue
9
Publish Date
2015
Start Page
1961
End Page
1974
DOI
10.1111/jsm.12966

Informed consent for biobanking: consensus-based guidelines for adequate comprehension.

Federal regulations and best practice guidelines identify categories of information that should be communicated to prospective biobank participants during the informed consent process. However, uncertainty remains about which of this information participants must understand to provide valid consent.We conducted a Delphi process to define "adequate comprehension" in the context of biobanking consent. The process involved an iterative series of three online surveys of a diverse panel of 51 experts, including genome scientists, biobank managers, ethics and policy experts, and community and participant representatives. We sought consensus (>70% agreement) concerning what specific details participants should know about 16 biobank consent topics.Consensus was achieved for 15 of the 16 consent topics. The exception was the comprehension needed regarding the Genetic Information Nondiscrimination Act.Our Delphi process was successful in identifying a concise set of key points that prospective participants must grasp to provide valid consent for biobanking. Specifying the level of knowledge sufficient for individuals to make an informed choice provides a basis for improving consent forms and processes, as well as an absolute metric for assessing the effectiveness of other interventions to improve comprehension.Genet Med 17 3, 226-233.

Authors
Beskow, LM; Dombeck, CB; Thompson, CP; Watson-Ormond, JK; Weinfurt, KP
MLA Citation
Beskow, LM, Dombeck, CB, Thompson, CP, Watson-Ormond, JK, and Weinfurt, KP. "Informed consent for biobanking: consensus-based guidelines for adequate comprehension." Genetics in medicine : official journal of the American College of Medical Genetics 17.3 (March 2015): 226-233.
PMID
25144889
Source
epmc
Published In
Genetics in Medicine
Volume
17
Issue
3
Publish Date
2015
Start Page
226
End Page
233
DOI
10.1038/gim.2014.102

Patient preferences in advanced or recurrent ovarian cancer.

The objective of this study was to elucidate relative preferences of women with ovarian cancer for symptoms, treatment-related side effects, and progression-free survival (PFS) relevant to choosing a treatment regimen.Women with advanced or recurrent ovarian cancer participated in a survey that included 3 methods to measure patient preferences (ratings, rankings, and a discrete-choice experiment) for 7 attributes: mode of administration, visit frequency, peripheral neuropathy, nausea and vomiting, fatigue, abdominal discomfort, and PFS. Participants were asked to choose between 2 unlabeled treatment scenarios that were characterized using the 7 attributes. Each participant completed 12 choice questions in which attribute levels were assigned according to an experimental design and a fixed-choice question representing 2 chemotherapy regimens for ovarian cancer.In total, 95 women completed the survey. Participants' ratings and rankings revealed greater concern and importance for PFS than for any other attribute (P < .0001 for all). The discrete-choice experiment revealed that the relative odds that a participant would choose a scenario with 18 months, 21 months, and 24 months of PFS versus 15 months of PFS were 1.5 (P = .01), 3.4 (P < .001), and 7.5 (P < .001), respectively. However, participants' choices indicated that they were willing to accept a shorter PFS to avoid severe side effects: 6.7 months to reduce nausea and vomiting from severe to mild, 5.0 months to reduce neuropathy from severe to mild, and 3.7 months to reduce abdominal symptoms from severe to moderate.PFS is the predominant driver of patient preferences for chemotherapy regimens. However, women in the current study were willing to trade significant PFS time for reductions in treatment-related toxicity.

Authors
Havrilesky, LJ; Alvarez Secord, A; Ehrisman, JA; Berchuck, A; Valea, FA; Lee, PS; Gaillard, SL; Samsa, GP; Cella, D; Weinfurt, KP; Abernethy, AP; Reed, SD
MLA Citation
Havrilesky, LJ, Alvarez Secord, A, Ehrisman, JA, Berchuck, A, Valea, FA, Lee, PS, Gaillard, SL, Samsa, GP, Cella, D, Weinfurt, KP, Abernethy, AP, and Reed, SD. "Patient preferences in advanced or recurrent ovarian cancer." Cancer 120.23 (December 2014): 3651-3659.
PMID
25091693
Source
epmc
Published In
Cancer
Volume
120
Issue
23
Publish Date
2014
Start Page
3651
End Page
3659
DOI
10.1002/cncr.28940

Improving patients' understanding of terms and phrases commonly used in self-reported measures of sexual function.

There is a significant gap in research regarding the readability and comprehension of existing sexual function measures. Patient-reported outcome measures may use terms not well understood by respondents with low literacy.This study aims to test comprehension of words and phrases typically used in sexual function measures to improve validity for all individuals, including those with low literacy.We recruited 20 men and 28 women for cognitive interviews on version 2.0 of the Patient-Reported Outcome Measurement Information System(®) (PROMIS(®) ) Sexual Function and Satisfaction measures. We assessed participants' reading level using the word reading subtest of the Wide Range Achievement Test. Sixteen participants were classified as having low literacy.In the first round of cognitive interviews, each survey item was reviewed by five or more people, at least two of whom had lower than a ninth-grade reading level (low literacy). Patient feedback was incorporated into a revised version of the items. In the second round of interviews, an additional three or more people (at least one with low literacy) reviewed each revised item.Participants with low literacy had difficulty comprehending terms such as aroused, orgasm, erection, ejaculation, incontinence, and vaginal penetration. Women across a range of literacy levels had difficulty with clinical terms like labia and clitoris. We modified unclear terms to include parenthetical descriptors or slang equivalents, which generally improved comprehension.Common words and phrases used across measures of self-reported sexual function are not universally understood. Researchers should appreciate these misunderstandings as a potential source of error in studies using self-reported measures of sexual function. This study also provides evidence for the importance of including individuals with low literacy in cognitive pretesting during the measure development.

Authors
Alexander, AM; Flynn, KE; Hahn, EA; Jeffery, DD; Keefe, FJ; Reeve, BB; Schultz, W; Reese, JB; Shelby, RA; Weinfurt, KP
MLA Citation
Alexander, AM, Flynn, KE, Hahn, EA, Jeffery, DD, Keefe, FJ, Reeve, BB, Schultz, W, Reese, JB, Shelby, RA, and Weinfurt, KP. "Improving patients' understanding of terms and phrases commonly used in self-reported measures of sexual function." The journal of sexual medicine 11.8 (August 2014): 1991-1998.
PMID
24902984
Source
epmc
Published In
The Journal of Sexual Medicine
Volume
11
Issue
8
Publish Date
2014
Start Page
1991
End Page
1998
DOI
10.1111/jsm.12599

Community consultation for prehospital research: experiences of study coordinators and principal investigators.

OBJECTIVE: To assess principal investigators' and study coordinators' views and experiences regarding community consultation in a multicenter trial of prehospital treatment for status epilepticus conducted under an exception from informed consent for research in emergency settings. METHODS: Principal investigators and study coordinators at all 17 hubs for the Rapid Anticonvulsant Medication Prior to Arrival Trial (RAMPART) were invited to complete a web-based survey regarding community consultation at their site for RAMPART. Major domains included 1) perceived goals of community consultation, 2) experiences with and views of community consultation methods used, 3) interactions with IRB regarding community consultation, and 4) general satisfaction and lessons learned. Descriptive statistics were tabulated for Likert scale data; relevant themes were reported for text-based data. RESULTS: Twenty-eight individuals (16 coordinators and 12 investigators) representing all 17 RAMPART hubs completed the survey. Respondents considered multiple community consultation goals to be important, with least support for the role of community consultation in altering study design. All sites used multiple methods (median = 5). The most widely used, and generally favored, method was attending previously scheduled meetings of existing groups. Respondents expressed frustration with low attendance and responsiveness at open public meetings. CONCLUSIONS: Coordinators and investigators in this trial viewed community consultation efforts as successful but reported real challenges generating public interest. Individuals with the condition under study were found to be more engaged and supportive of the trial. Respondents endorsed numerous potential goals of the community consultation process and often combined methods to achieve these goals.

Authors
Dickert, NW; Govindarajan, P; Harney, D; Silbergleit, R; Sugarman, J; Weinfurt, KP; Pentz, RD
MLA Citation
Dickert, NW, Govindarajan, P, Harney, D, Silbergleit, R, Sugarman, J, Weinfurt, KP, and Pentz, RD. "Community consultation for prehospital research: experiences of study coordinators and principal investigators." Prehosp Emerg Care 18.2 (April 2014): 274-281.
PMID
24401134
Source
pubmed
Published In
Prehospital Emergency Care (Elsevier)
Volume
18
Issue
2
Publish Date
2014
Start Page
274
End Page
281
DOI
10.3109/10903127.2013.856503

Impact of cardiovascular events on change in quality of life and utilities in patients after myocardial infarction: a VALIANT study (valsartan in acute myocardial infarction).

OBJECTIVES: The objective of this study was to determine the impact of nonfatal cardiovascular (CV) events on changes in health-related quality of life (HRQL). BACKGROUND: There is limited understanding of the impact of nonfatal CV events on long-term changes in HRQL in survivors of myocardial infarction (MI). METHODS: The VALIANT (Valsartan In Acute Myocardial Infarction) trial enrolled 14,703 patients post-MI complicated by Killip class II or higher (scale measuring heart failure severity post-MI ranging from class I to IV) and/or reduced ejection fraction. The HRQL substudy included 2,556 (17.4%) patients who completed the EQ-5D with 5 questions, with responses mapped to utility weight on a scale of 0 to 1 and a visual analog scale (VAS) ranging from 0 (worst) to 100 (best) imaginable health state. EQ-5D was administered at baseline and 6, 12, 20, and 24 months. The trajectory of EQ-5D scores was developed by using linear mixed effects regression models with calculation of deviation from this trajectory after nonfatal CV events. Patients who died before the next EQ-5D assessment were excluded. RESULTS: Over a 2-year period, 597 patients experienced a nonfatal CV event and survived to have another EQ-5D assessment. Their baseline EQ-5D scores were lower than patients without a subsequent nonfatal CV event (VAS 61.0 ± 19 vs 68.2 ± 18 [p < 0.001] and US-based utility score 0.76 ± 0.22 vs 0.83 ± 0.17 [p < 0.001]). These patients with CV events experienced a trajectory-adjusted 6.6 point decrease (p < 0.001) in VAS scores and a 0.07 decrease (p < 0.001) in utility score after the nonfatal CV event. CONCLUSIONS: MI survivors suffering a CV event experienced significantly worse HRQL than their previous trajectory, suggesting that generic instruments can be responsive to nonfatal events. Reduction in nonfatal CV events may affect longitudinal changes in HRQL.

Authors
Lewis, EF; Li, Y; Pfeffer, MA; Solomon, SD; Weinfurt, KP; Velazquez, EJ; Califf, RM; Rouleau, J-L; Kober, L; White, HD; Schulman, KA; Reed, SD
MLA Citation
Lewis, EF, Li, Y, Pfeffer, MA, Solomon, SD, Weinfurt, KP, Velazquez, EJ, Califf, RM, Rouleau, J-L, Kober, L, White, HD, Schulman, KA, and Reed, SD. "Impact of cardiovascular events on change in quality of life and utilities in patients after myocardial infarction: a VALIANT study (valsartan in acute myocardial infarction)." JACC. Heart failure 2.2 (April 2014): 159-165.
PMID
24720924
Source
epmc
Published In
JACC: Heart Failure
Volume
2
Issue
2
Publish Date
2014
Start Page
159
End Page
165
DOI
10.1016/j.jchf.2013.12.003

Accuracy of 30-day recall for components of sexual function and the moderating effects of gender and mood.

INTRODUCTION: Despite the ubiquity of 1-month recall periods for measures of sexual function, there is limited evidence for how well recalled responses correspond to individuals' actual daily experiences. AIM: To characterize the correspondence between daily sexual experiences and 1-month recall of those experiences. METHODS: Following a baseline assessment of sexual functioning, health, and demographic characteristics, 202 adults from the general population (101 women, 101 men) were recruited to complete daily assessments of their sexual function online for 30 days and a single recall measure of sexual function at day 30. MAIN OUTCOME MEASURES: At the baseline and 30-day follow-ups, participants answered items asking about sexual satisfaction, sexual activities, interest, interfering factors, orgasm, sexual functioning, and use of therapeutic aids during the previous 30 days. Participants also completed a measure of positive and negative affect at follow-up. The main outcome measures were agreement between the daily and 1-month recall versions of the sexual function items. RESULTS: Accuracy of recall varied depending on the item and on the gender and mood of the respondent. Recall was better (low bias and higher correlations) for sexual activities, vaginal discomfort, erectile function, and more frequently used therapeutic aids. Recall was poorer for interest, affectionate behaviors (e.g., kissing), and orgasm-related items. Men more than women overestimated frequency of interest and masturbation. Concurrent mood was related to over- or underreporting for six items addressing the frequency of masturbation and vaginal intercourse, erectile function, and orgasm. CONCLUSIONS: A 1-month recall period seems acceptable for many aspects of sexual function in this population, but recall for some items was poor. Researchers should be aware that concurrent mood can have a powerful biasing effect on reports of sexual function.

Authors
Weinfurt, KP; Lin, L; Dombeck, CB; Broderick, JE; Snyder, DC; Williams, MS; Fawzy, MR; Flynn, KE
MLA Citation
Weinfurt, KP, Lin, L, Dombeck, CB, Broderick, JE, Snyder, DC, Williams, MS, Fawzy, MR, and Flynn, KE. "Accuracy of 30-day recall for components of sexual function and the moderating effects of gender and mood." J Sex Med 11.3 (March 2014): 678-696.
PMID
23802907
Source
pubmed
Published In
The Journal of Sexual Medicine
Volume
11
Issue
3
Publish Date
2014
Start Page
678
End Page
696
DOI
10.1111/jsm.12225

Consulting communities when patients cannot consent: A multicenter study of community consultation for research in emergency settings

OBJECTIVES:: To assess the range of responses to community consultation efforts conducted within a large network and the impact of different consultation methods on acceptance of exception from informed consent research and understanding of the proposed study. DESIGN:: A cognitively pretested survey instrument was administered to 2,612 community consultation participants at 12 U.S. centers participating in a multicenter trial of treatment for acute traumatic brain injury. SETTING:: Survey nested within community consultation for a phase III randomized controlled trial of treatment for acute traumatic brain injury conducted within a multicenter trial network and using exception from informed consent. SUBJECTS:: Adult participants in community consultation events. INTERVENTIONS:: Community consultation efforts at participating sites. MEASUREMENTS AND MAIN RESULTS:: Acceptance of exception from informed consent in general, attitude toward personal exception from informed consent enrollment, and understanding of the study content were assessed. Fifty-four percent of participants agreed exception from informed consent enrollment was acceptable in general in the proposed study; 71% were accepting of personal exception from informed consent enrollment. Participants in interactive versus noninteractive community consultation events were more accepting of exception from informed consent in general (63% vs 49%) and personal exception from informed consent inclusion (77% vs 67%). Interactive community consultation participants had high-level recall of study content significantly more often than noninteractive consultation participants (77% vs 67%). Participants of interactive consultation were more likely to recall possible study benefits (61% vs 45%) but less likely to recall potential risks (56% vs 69%). CONCLUSIONS:: Interactive community consultation methods were associated with increased acceptance of exception from informed consent and greater overall recall of study information but lower recall of risks. There was also significant variability in exception from informed consent acceptance among different interactive consultation events. These findings have important implications for institutional review board and investigators conducting exception from informed consent research and for community engagement efforts in research more generally. © 2013 by the Society of Critical Care Medicine and Lippincott.

Authors
Dickert, NW; Mah, VA; Biros, MH; Harney, DM; Silbergleit, R; Sugarman, J; Veledar, E; Weinfurt, KP; Wright, DW; Pentz, RD
MLA Citation
Dickert, NW, Mah, VA, Biros, MH, Harney, DM, Silbergleit, R, Sugarman, J, Veledar, E, Weinfurt, KP, Wright, DW, and Pentz, RD. "Consulting communities when patients cannot consent: A multicenter study of community consultation for research in emergency settings." Critical Care Medicine 42.2 (February 1, 2014): 272-280.
Source
scopus
Published In
Critical Care Medicine
Volume
42
Issue
2
Publish Date
2014
Start Page
272
End Page
280
DOI
10.1097/CCM.0b013e3182a27759

Consulting communities when patients cannot consent: a multicenter study of community consultation for research in emergency settings.

OBJECTIVES: To assess the range of responses to community consultation efforts conducted within a large network and the impact of different consultation methods on acceptance of exception from informed consent research and understanding of the proposed study. DESIGN: A cognitively pretested survey instrument was administered to 2,612 community consultation participants at 12 U.S. centers participating in a multicenter trial of treatment for acute traumatic brain injury. SETTING: Survey nested within community consultation for a phase III randomized controlled trial of treatment for acute traumatic brain injury conducted within a multicenter trial network and using exception from informed consent. SUBJECTS: Adult participants in community consultation events. INTERVENTIONS: Community consultation efforts at participating sites. MEASUREMENTS AND MAIN RESULTS: Acceptance of exception from informed consent in general, attitude toward personal exception from informed consent enrollment, and understanding of the study content were assessed. Fifty-four percent of participants agreed exception from informed consent enrollment was acceptable in general in the proposed study; 71% were accepting of personal exception from informed consent enrollment. Participants in interactive versus noninteractive community consultation events were more accepting of exception from informed consent in general (63% vs 49%) and personal exception from informed consent inclusion (77% vs 67%). Interactive community consultation participants had high-level recall of study content significantly more often than noninteractive consultation participants (77% vs 67%). Participants of interactive consultation were more likely to recall possible study benefits (61% vs 45%) but less likely to recall potential risks (56% vs 69%). CONCLUSIONS: Interactive community consultation methods were associated with increased acceptance of exception from informed consent and greater overall recall of study information but lower recall of risks. There was also significant variability in exception from informed consent acceptance among different interactive consultation events. These findings have important implications for institutional review board and investigators conducting exception from informed consent research and for community engagement efforts in research more generally.

Authors
Dickert, NW; Mah, VA; Biros, MH; Harney, DM; Silbergleit, R; Sugarman, J; Veledar, E; Weinfurt, KP; Wright, DW; Pentz, RD
MLA Citation
Dickert, NW, Mah, VA, Biros, MH, Harney, DM, Silbergleit, R, Sugarman, J, Veledar, E, Weinfurt, KP, Wright, DW, and Pentz, RD. "Consulting communities when patients cannot consent: a multicenter study of community consultation for research in emergency settings." Crit Care Med 42.2 (February 2014): 272-280.
PMID
24145834
Source
pubmed
Published In
Critical Care Medicine
Volume
42
Issue
2
Publish Date
2014
Start Page
272
End Page
280
DOI
10.1097/CCM.0b013e3182a27759

Accuracy of 30-Day Recall for Components of Sexual Function and the Moderating Effects of Gender and Mood

Introduction: Despite the ubiquity of 1-month recall periods for measures of sexual function, there is limited evidence for how well recalled responses correspond to individuals' actual daily experiences. Aim: To characterize the correspondence between daily sexual experiences and 1-month recall of those experiences. Methods: Following a baseline assessment of sexual functioning, health, and demographic characteristics, 202 adults from the general population (101 women, 101 men) were recruited to complete daily assessments of their sexual function online for 30 days and a single recall measure of sexual function at day 30. Main Outcome Measures: At the baseline and 30-day follow-ups, participants answered items asking about sexual satisfaction, sexual activities, interest, interfering factors, orgasm, sexual functioning, and use of therapeutic aids during the previous 30 days. Participants also completed a measure of positive and negative affect at follow-up. The main outcome measures were agreement between the daily and 1-month recall versions of the sexual function items. Results: Accuracy of recall varied depending on the item and on the gender and mood of the respondent. Recall was better (low bias and higher correlations) for sexual activities, vaginal discomfort, erectile function, and more frequently used therapeutic aids. Recall was poorer for interest, affectionate behaviors (e.g., kissing), and orgasm-related items. Men more than women overestimated frequency of interest and masturbation. Concurrent mood was related to over- or underreporting for six items addressing the frequency of masturbation and vaginal intercourse, erectile function, and orgasm. Conclusions: A 1-month recall period seems acceptable for many aspects of sexual function in this population, but recall for some items was poor. Researchers should be aware that concurrent mood can have a powerful biasing effect on reports of sexual function. © 2013 International Society for Sexual Medicine.

Authors
Weinfurt, KP; Lin, L; Dombeck, CB; Broderick, JE; Snyder, DC; Williams, MS; Fawzy, MR; Flynn, KE
MLA Citation
Weinfurt, KP, Lin, L, Dombeck, CB, Broderick, JE, Snyder, DC, Williams, MS, Fawzy, MR, and Flynn, KE. "Accuracy of 30-Day Recall for Components of Sexual Function and the Moderating Effects of Gender and Mood." Journal of Sexual Medicine 11.3 (January 1, 2014): 678-696.
Source
scopus
Published In
The Journal of Sexual Medicine
Volume
11
Issue
3
Publish Date
2014
Start Page
678
End Page
696
DOI
10.1111/jsm.12225

Improving patients' understanding of terms and phrases commonly used in self-reported measures of sexual function

Introduction: There is a significant gap in research regarding the readability and comprehension of existing sexual function measures. Patient-reported outcome measures may use terms not well understood by respondents with low literacy. Aim: This study aims to test comprehension of words and phrases typically used in sexual function measures to improve validity for all individuals, including those with low literacy. Methods: We recruited 20 men and 28 women for cognitive interviews on version 2.0 of the Patient-Reported Outcome Measurement Information System ® (PROMIS ® ) Sexual Function and Satisfaction measures. We assessed participants' reading level using the word reading subtest of the Wide Range Achievement Test. Sixteen participants were classified as having low literacy. Main Outcome Measures: In the first round of cognitive interviews, each survey item was reviewed by five or more people, at least two of whom had lower than a ninth-grade reading level (low literacy). Patient feedback was incorporated into a revised version of the items. In the second round of interviews, an additional three or more people (at least one with low literacy) reviewed each revised item. Results: Participants with low literacy had difficulty comprehending terms such as aroused, orgasm, erection, ejaculation, incontinence, and vaginal penetration. Women across a range of literacy levels had difficulty with clinical terms like labia and clitoris. We modified unclear terms to include parenthetical descriptors or slang equivalents, which generally improved comprehension. Conclusions: Common words and phrases used across measures of self-reported sexual function are not universally understood. Researchers should appreciate these misunderstandings as a potential source of error in studies using self-reported measures of sexual function. This study also provides evidence for the importance of including individuals with low literacy in cognitive pretesting during the measure development. Alexander AM, Flynn KE, Hahn EA, Jeffery DD, Keefe FJ, Reeve BB, Schultz W, Reese JB, Shelby RA, and Weinfurt KP. Improving patients' understanding of terms and phrases commonly used in self-reported measures of sexual function. J Sex Med 2014;11:1991-1998. © 2014 International Society for Sexual Medicine.

Authors
Alexander, AM; Flynn, KE; Hahn, EA; Jeffery, DD; Keefe, FJ; Reeve, BB; Schultz, W; Reese, JB; Shelby, RA; Weinfurt, KP
MLA Citation
Alexander, AM, Flynn, KE, Hahn, EA, Jeffery, DD, Keefe, FJ, Reeve, BB, Schultz, W, Reese, JB, Shelby, RA, and Weinfurt, KP. "Improving patients' understanding of terms and phrases commonly used in self-reported measures of sexual function." Journal of Sexual Medicine 11.8 (January 1, 2014): 1991-1998.
Source
scopus
Published In
The Journal of Sexual Medicine
Volume
11
Issue
8
Publish Date
2014
Start Page
1991
End Page
1998
DOI
10.1111/jsm.12599

Patient preferences in advanced or recurrent ovarian cancer

© 2014 American Cancer Society. BACKGROUND: The objective of this study was to elucidate relative preferences of women with ovarian cancer for symptoms, treatment-related side effects, and progression-free survival (PFS) relevant to choosing a treatment regimen. METHODS: Women with advanced or recurrent ovarian cancer participated in a survey that included 3 methods to measure patient preferences (ratings, rankings, and a discrete-choice experiment) for 7 attributes: mode of administration, visit frequency, peripheral neuropathy, nausea and vomiting, fatigue, abdominal discomfort, and PFS. Participants were asked to choose between 2 unlabeled treatment scenarios that were characterized using the 7 attributes. Each participant completed 12 choice questions in which attribute levels were assigned according to an experimental design and a fixed-choice question representing 2 chemotherapy regimens for ovarian cancer. RESULTS: In total, 95 women completed the survey. Participants' ratings and rankings revealed greater concern and importance for PFS than for any other attribute (P < .0001 for all). The discrete-choice experiment revealed that the relative odds that a participant would choose a scenario with 18 months, 21 months, a nd 24 months of PFS versus 15 months of PFS were 1.5 (P5.01), 3.4 (P < .001), and 7.5 (P < .001), respectively. However, participants' choices indicated that they were willing to accept a shorter PFS to avoid severe side effects: 6.7 months to reduce nausea and vomiting from severe to mild, 5.0 months to reduce neuropathy from severe to mild, and 3.7 months to reduce abdominal symptoms from severe to moderate. CONCLUSIONS: PFS is the predominant driver of patient preferences for chemotherapy regimens. However, women in the current study were willing to trade significant PFS time for reductions in treatment-related toxicity.

Authors
Havrilesky, LJ; Secord, AA; Ehrisman, JA; Berchuck, A; Valea, FA; Lee, PS; Gaillard, SL; Samsa, GP; Cella, D; Weinfurt, KP; Abernethy, AP; Reed, SD
MLA Citation
Havrilesky, LJ, Secord, AA, Ehrisman, JA, Berchuck, A, Valea, FA, Lee, PS, Gaillard, SL, Samsa, GP, Cella, D, Weinfurt, KP, Abernethy, AP, and Reed, SD. "Patient preferences in advanced or recurrent ovarian cancer." Cancer 120.23 (January 1, 2014): 3651-3659.
Source
scopus
Published In
Cancer
Volume
120
Issue
23
Publish Date
2014
Start Page
3651
End Page
3659
DOI
10.1002/cncr.28940

An evaluation of mobile health application tools.

BACKGROUND: The rapid growth in the number of mobile health applications could have profound significance in the prevention of disease or in the treatment of patients with chronic disease such as diabetes. OBJECTIVE: The objective of this study was to describe the characteristics of the most common mobile health care applications available in the Apple iTunes marketplace. METHODS: We undertook a descriptive analysis of a sample of applications in the "health and wellness" category of the Apple iTunes Store. We characterized each application in terms of its health factor and primary method of user engagement. The main outcome measures of the analysis were price, health factors, and methods of user engagement. RESULTS: Among the 400 applications that met the inclusion criteria, the mean price of the most frequently downloaded paid applications was US $2.24 (SD $1.30), and the mean price of the most currently available paid applications was US $2.27 (SD $1.60). Fitness/training applications were the most popular (43.5%, 174/400). The next two most common categories were health resource (15.0%, 60/400) and diet/caloric intake (14.3%, 57/400). Applications in the health resource category constituted 5.5% (22/400) of the applications reviewed. Self-monitoring was the most common primary user engagement method (74.8%, 299/400). A total of 20.8% (83/400) of the applications used two or more user engagement approaches, with self-monitoring and progress tracking being the most frequent. CONCLUSIONS: Most of the popular mobile health applications focus on fitness and self-monitoring. The approaches to user engagement utilized by these applications are limited and present an opportunity to improve the effectiveness of the technology.

Authors
Sama, PR; Eapen, ZJ; Weinfurt, KP; Shah, BR; Schulman, KA
MLA Citation
Sama, PR, Eapen, ZJ, Weinfurt, KP, Shah, BR, and Schulman, KA. "An evaluation of mobile health application tools." JMIR mHealth and uHealth 2.2 (January 2014): e19-.
PMID
25099179
Source
epmc
Published In
JMIR mHealth and uHealth
Volume
2
Issue
2
Publish Date
2014
Start Page
e19
DOI
10.2196/mhealth.3088

A comparison of cancer survivors from the PROMIS study selecting telephone versus online questionnaires

Authors
Williams, MS; Snyder, DC; Sloane, R; Levens, J; Flynn, KE; Dombeck, CB; Demark-Wahnefried, W; Weinfurt, KP
MLA Citation
Williams, MS, Snyder, DC, Sloane, R, Levens, J, Flynn, KE, Dombeck, CB, Demark-Wahnefried, W, and Weinfurt, KP. "A comparison of cancer survivors from the PROMIS study selecting telephone versus online questionnaires." Psycho-Oncology 22.11 (November 1, 2013): 2632-2635. (Letter)
Source
scopus
Published In
Psycho-Oncology
Volume
22
Issue
11
Publish Date
2013
Start Page
2632
End Page
2635
DOI
10.1002/pon.3330

A comparison of cancer survivors from the PROMIS study selecting telephone versus online questionnaires.

Authors
Williams, MS; Snyder, DC; Sloane, R; Levens, J; Flynn, KE; Dombeck, CB; Demark-Wahnefried, W; Weinfurt, KP
MLA Citation
Williams, MS, Snyder, DC, Sloane, R, Levens, J, Flynn, KE, Dombeck, CB, Demark-Wahnefried, W, and Weinfurt, KP. "A comparison of cancer survivors from the PROMIS study selecting telephone versus online questionnaires." Psychooncology 22.11 (November 2013): 2632-2635. (Letter)
PMID
23813785
Source
pubmed
Published In
Psycho-Oncology
Volume
22
Issue
11
Publish Date
2013
Start Page
2632
End Page
2635
DOI
10.1002/pon.3330

The National Cancer Institute-American Society of Clinical Oncology Cancer Trial Accrual Symposium: summary and recommendations.

INTRODUCTION: Many challenges to clinical trial accrual exist, resulting in studies with inadequate enrollment and potentially delaying answers to important scientific and clinical questions. METHODS: The National Cancer Institute (NCI) and the American Society of Clinical Oncology (ASCO) cosponsored the Cancer Trial Accrual Symposium: Science and Solutions on April 29-30, 2010 to examine the state of accrual science related to patient/community, physician/provider, and site/organizational influences, and identify new interventions to facilitate clinical trial enrollment. The symposium featured breakout sessions, plenary sessions, and a poster session including 100 abstracts. Among the 358 attendees were clinical investigators, researchers of accrual strategies, research administrators, nurses, research coordinators, patient advocates, and educators. A bibliography of the accrual literature in these three major areas was provided to participants in advance of the meeting. After the symposium, the literature in these areas was revisited to determine if the symposium recommendations remained relevant within the context of the current literature. RESULTS: Few rigorously conducted studies have tested interventions to address challenges to clinical trials accrual. Attendees developed recommendations for improving accrual and identified priority areas for future accrual research at the patient/community, physician/provider, and site/organizational levels. Current literature continues to support the symposium recommendations. CONCLUSIONS: A combination of approaches addressing both the multifactorial nature of accrual challenges and the characteristics of the target population may be needed to improve accrual to cancer clinical trials. Recommendations for best practices and for future research developed from the symposium are provided.

Authors
Denicoff, AM; McCaskill-Stevens, W; Grubbs, SS; Bruinooge, SS; Comis, RL; Devine, P; Dilts, DM; Duff, ME; Ford, JG; Joffe, S; Schapira, L; Weinfurt, KP; Michaels, M; Raghavan, D; Richmond, ES; Zon, R; Albrecht, TL; Bookman, MA; Dowlati, A; Enos, RA; Fouad, MN; Good, M; Hicks, WJ; Loehrer, PJ; Lyss, AP; Wolff, SN; Wujcik, DM; Meropol, NJ
MLA Citation
Denicoff, AM, McCaskill-Stevens, W, Grubbs, SS, Bruinooge, SS, Comis, RL, Devine, P, Dilts, DM, Duff, ME, Ford, JG, Joffe, S, Schapira, L, Weinfurt, KP, Michaels, M, Raghavan, D, Richmond, ES, Zon, R, Albrecht, TL, Bookman, MA, Dowlati, A, Enos, RA, Fouad, MN, Good, M, Hicks, WJ, Loehrer, PJ, Lyss, AP, Wolff, SN, Wujcik, DM, and Meropol, NJ. "The National Cancer Institute-American Society of Clinical Oncology Cancer Trial Accrual Symposium: summary and recommendations." J Oncol Pract 9.6 (November 2013): 267-276.
PMID
24130252
Source
pubmed
Published In
Journal of Oncology Practice
Volume
9
Issue
6
Publish Date
2013
Start Page
267
End Page
276
DOI
10.1200/JOP.2013.001119

Hemoglobin, exercise training, and health status in patients with chronic heart failure (from the HF-ACTION randomized controlled trial).

Anemia is common in patients with chronic heart failure (HF), with a prevalence ranging from 10% to 56%, and may be a risk factor for poor outcomes. Anemia in HF remains poorly understood, with significant gaps in its impact on health-related quality of life (HRQoL), with most studies in HF being retrospective or from registries. The purpose of this study was to explore the relation of hemoglobin (Hgb) with HRQoL and training-induced changes in HRQoL in a cohort of patients in Heart Failure: A Controlled Trial Investigating Outcomes of Exercise Training (HF-ACTION). Using data from HF-ACTION, a randomized controlled trial of exercise training in patients with HF and low left ventricular ejection fractions, HRQoL was measured using the Kansas City Cardiomyopathy Questionnaire (KCCQ) at baseline, 3 and 12 months, and annually up to 4 years. Treatment group effects on HRQoL were estimated using linear mixed models according to the intention-to-treat principle. It was hypothesized that baseline Hgb would be correlated with baseline KCCQ scales and that Hgb would moderate the beneficial effect of exercise training on HRQoL. Hgb level was not significantly correlated with baseline HRQoL. Baseline Hgb did not moderate the beneficial effect of exercise training on KCCQ overall or subscales relative to usual care. In conclusion, in the HF-ACTION cohort, there was no correlation with baseline Hgb and baseline HRQoL as measured by the KCCQ. In addition, the beneficial effects of HRQoL from exercise training were not modulated by baseline Hgb.

Authors
Piña, IL; Lin, L; Weinfurt, KP; Isitt, JJ; Whellan, DJ; Schulman, KA; Flynn, KE; HF-ACTION Investigators,
MLA Citation
Piña, IL, Lin, L, Weinfurt, KP, Isitt, JJ, Whellan, DJ, Schulman, KA, Flynn, KE, and HF-ACTION Investigators, . "Hemoglobin, exercise training, and health status in patients with chronic heart failure (from the HF-ACTION randomized controlled trial)." Am J Cardiol 112.7 (October 1, 2013): 971-976.
PMID
23809621
Source
pubmed
Published In
American Journal of Cardiology
Volume
112
Issue
7
Publish Date
2013
Start Page
971
End Page
976
DOI
10.1016/j.amjcard.2013.05.033

Use of central institutional review boards for multicenter clinical trials in the United States: a review of the literature.

BACKGROUND: To improve the efficiency of conducting multicenter clinical trials, the Food and Drug Administration, the Office of Human Research Protections, and the Department of Health and Human Services have expressed support for using a centralized institutional review board (IRB) process. However, research institutions differ in their willingness to defer to central IRBs. PURPOSE: We aimed to review and describe peer-reviewed journal articles on the use of central IRBs for multicenter clinical trials in the United States in an effort to inform the policy discussion about central IRBs. METHODS: We used a PubMed search and consulted IRB experts and the bibliographies of other reviews to identify relevant commentaries and empirical studies. RESULTS: Our search identified 33 articles related to the use of central IRBs for multicenter trials in the United States. Of these, 22 were commentary pieces and 11 were empirical studies. LIMITATIONS: Our review was restricted to journal articles about the use of central IRBs for multicenter clinical trials in the United States. CONCLUSIONS: There is limited empirical work on the use of central IRBs for multicenter trials in the United States. Most published studies focused on problems in efficiency associated with redundant local reviews of multicenter studies and the potential benefits of a centralized system. Because the absence of studies on the use of central IRBs may be due to their infrequent use, additional work is needed to generate data on the use of central IRBs and to elucidate and address the concerns that research institutions have about deferring ethical review to a central IRB.

Authors
Check, DK; Weinfurt, KP; Dombeck, CB; Kramer, JM; Flynn, KE
MLA Citation
Check, DK, Weinfurt, KP, Dombeck, CB, Kramer, JM, and Flynn, KE. "Use of central institutional review boards for multicenter clinical trials in the United States: a review of the literature." Clin Trials 10.4 (August 2013): 560-567. (Review)
PMID
23666951
Source
pubmed
Published In
Clinical Trials
Volume
10
Issue
4
Publish Date
2013
Start Page
560
End Page
567
DOI
10.1177/1740774513484393

Participants' perspectives on safety monitoring in clinical trials.

BACKGROUND: Minimizing the risk to study participants is an essential requirement of ethical research. Respecting the rights of subjects is also paramount, which includes respecting their autonomy by making available important information about the evolving safety profile of an investigational product as the trial progresses. Little is known about what trial participants understand and expect regarding monitoring and communication of serious adverse events during the conduct of a trial in which they have agreed to participate. PURPOSE: To explore understanding and expectations of potential trial participants concerning monitoring and communication of serious adverse events during a clinical trial. METHODS: A professional moderator led four 90-min, in-person focus groups: two groups with individuals who had never participated in a clinical trial and two groups with people who had. After relevant research terms were defined and existing regulations were explained, discussion focused on how participants expected safety to be monitored and communicated during the conduct of a clinical trial. Group comments were video-recorded and transcribed and then analyzed by the investigators. RESULTS: The 27 racially diverse focus group members were largely unaware of existing safeguards and regulations to manage risk in clinical trials. Many people expressed a desire for increased transparency about serious adverse events during the trial as well as shortened reporting deadlines. Focus group members also spontaneously expressed concerns about potential financial conflicts of interest in monitoring and reporting serious adverse events. LIMITATIONS: This was a single-site, qualitative study and is not meant to establish the prevalence of beliefs. CONCLUSIONS: Potential trial participants have limited understanding and a wide range of expectations about how safety monitoring in clinical trials should be managed and communicated. The overall tenor of opinion suggests unease about participant safety and a desire to have more information conveyed by sponsors to investigators and, in some cases, by investigators to participants. Additional study in other regions and settings may be useful to more broadly explore the range of participants' beliefs and expectations. In the meantime, engaging patient advocates in the design of clinical trials and clearly communicating to trial participants the plan for oversight of their safety may help ease the types of concerns expressed in this study.

Authors
Flynn, KE; Kramer, JM; Dombeck, CB; Weinfurt, KP
MLA Citation
Flynn, KE, Kramer, JM, Dombeck, CB, and Weinfurt, KP. "Participants' perspectives on safety monitoring in clinical trials." Clin Trials 10.4 (August 2013): 552-559.
PMID
23644503
Source
pubmed
Published In
Clinical Trials
Volume
10
Issue
4
Publish Date
2013
Start Page
552
End Page
559
DOI
10.1177/1740774513484394

A Web-based communication aid for patients with cancer: the CONNECT Study.

BACKGROUND: Cancer patients and their oncologists often report differing perceptions of consultation discussions and discordant expectations regarding treatment outcomes. CONNECT, a computer-based communication aid, was developed to improve communication between patients and oncologists. METHODS: CONNECT includes assessment of patient values, goals, and communication preferences; patient communication skills training; and a preconsultation physician summary report. CONNECT was tested in a 3-arm, prospective, randomized clinical trial. Prior to the initial medical oncology consultation, adult patients with advanced cancer were randomized to the following arms: 1) control; 2) CONNECT with physician summary; or 3) CONNECT without physician summary. Outcomes were assessed with postconsultation surveys. RESULTS: Of 743 patients randomized, 629 completed postconsultation surveys. Patients in the intervention arms (versus control) felt that the CONNECT program made treatment decisions easier to reach (P = .003) and helped them to be more satisfied with these decisions (P < .001). In addition, patients in the intervention arms reported higher levels of satisfaction with physician communication format (P = .026) and discussion regarding support services (P = .029) and quality of life concerns (P = .042). The physician summary did not impact outcomes. Patients with higher levels of education and poorer physical functioning experienced greater benefit from CONNECT. CONCLUSIONS: This prospective randomized clinical trial demonstrates that computer-based communication skills training can positively affect patient satisfaction with communication and decision-making. Measurable patient characteristics may be used to identify subgroups most likely to benefit from an intervention such as CONNECT.

Authors
Meropol, NJ; Egleston, BL; Buzaglo, JS; Balshem, A; Benson, AB; Cegala, DJ; Cohen, RB; Collins, M; Diefenbach, MA; Miller, SM; Fleisher, L; Millard, JL; Ross, EA; Schulman, KA; Silver, A; Slater, E; Solarino, N; Sulmasy, DP; Trinastic, J; Weinfurt, KP
MLA Citation
Meropol, NJ, Egleston, BL, Buzaglo, JS, Balshem, A, Benson, AB, Cegala, DJ, Cohen, RB, Collins, M, Diefenbach, MA, Miller, SM, Fleisher, L, Millard, JL, Ross, EA, Schulman, KA, Silver, A, Slater, E, Solarino, N, Sulmasy, DP, Trinastic, J, and Weinfurt, KP. "A Web-based communication aid for patients with cancer: the CONNECT Study." Cancer 119.7 (April 1, 2013): 1437-1445.
PMID
23335150
Source
pubmed
Published In
Cancer
Volume
119
Issue
7
Publish Date
2013
Start Page
1437
End Page
1445
DOI
10.1002/cncr.27874

Construct validity of the PROMIS® sexual function and satisfaction measures in patients with cancer.

With data from a diverse sample of patients either in treatment for cancer or post-treatment for cancer, we examine inter-domain and cross-domain correlations among the core domains of the Patient-Reported Outcomes Measurement Information System Sexual Function and Satisfaction measures (PROMIS® SexFS) and the corresponding domains from conceptually-similar measures of sexual function, the International Index of Erectile Function and the Female Sexual Function Index.Men (N=389) and women (N=430) were recruited from a tumor registry, oncology clinics, and an internet panel. The PROMIS SexFS, International Index of Erectile Function, and Female Sexual Function Index were used to collect participants' self-reported sexual function. The domains shared among the measures include desire/interest in sexual activity, lubrication and vaginal discomfort/pain (women), erectile function (men), orgasm, and satisfaction. We examined correlations among different domains within the same instrument (discriminant validity) and correlations among similar domains measured by different instruments (convergent validity). Correlations demonstrating discriminant validity ranged from 0.38 to 0.73 for men and 0.48 to 0.74 for women, while correlations demonstrating convergent validity ranged from 0.62 to 0.83 for men and 0.71 to 0.92 for women. As expected, correlations demonstrating convergent validity were higher than correlations demonstrating discriminant validity, with one exception (orgasm for men).Construct validity was supported by convergent and discriminant validity in a diverse sample of patients with cancer. For patients with cancer who may or may not have sexual dysfunction, the PROMIS SexFS measures provide a comprehensive assessment of key domains of sexual function and satisfaction.

Authors
Flynn, KE; Reeve, BB; Lin, L; Cyranowski, JM; Bruner, DW; Weinfurt, KP
MLA Citation
Flynn, KE, Reeve, BB, Lin, L, Cyranowski, JM, Bruner, DW, and Weinfurt, KP. "Construct validity of the PROMIS® sexual function and satisfaction measures in patients with cancer." Health and quality of life outcomes 11 (March 11, 2013): 40-.
PMID
23497200
Source
epmc
Published In
Health and Quality of Life Outcomes
Volume
11
Publish Date
2013
Start Page
40
DOI
10.1186/1477-7525-11-40

Patient time costs associated with sensor-augmented insulin pump therapy for type 1 diabetes: results from the STAR 3 randomized trial.

BACKGROUND: Sensor-augmented pump therapy (SAPT) leads to lower glycated hemoglobin levels than multiple daily injections of insulin (MDI) in patients with type 1 diabetes. Patient time and costs associated with SAPT are not known. OBJECTIVE: We compared time spent on diabetes-related care, changes in time, and associated patient time costs between patients randomly assigned to SAPT or MDI. DESIGN, SETTING, AND PARTICIPANTS. During a 52-week clinical trial, participants aged 7 to 70 years (n = 483) reported total time per week spent on diabetes-related care. MEASUREMENTS: Patient time, including comparisons during pump initiation, 52-week patient time costs, and changes in weekly time estimates after pump initiation. RESULTS: At baseline, patients in the MDI group reported spending an average of 4.0 hours per week on diabetes-related care. During the pump initiation period (weeks 1-7), SAPT patients spent 1.9 hours more per week than MDI patients (95% confidence interval [CI], 1.2-2.6). After the initiation period (weeks 8-52), SAPT patients spent 1 hour more per week (95% CI, 0.4-1.7) than MDI patients (i.e., 4.4 v. 3.4 hours); patients in both groups spent progressively less time on diabetes-related care by 1.2 minutes per week (95% CI, -1.7 to -0.7). Overall, mean time costs per person were $4600 with the SAPT group and $3523 with the MDI group (difference, $1077; 95% CI, $491-$1638). LIMITATIONS: Time spent on specific activities was not collected, and the estimates do not explicitly account for caregiver time associated with diabetes care activities. CONCLUSIONS: Patients receiving SAPT v. MDI spent approximately 2 hours more per week on diabetes-related care during pump initiation and 1 hour more per week thereafter, resulting in higher patient time costs.

Authors
Kamble, S; Weinfurt, KP; Schulman, KA; Reed, SD
MLA Citation
Kamble, S, Weinfurt, KP, Schulman, KA, and Reed, SD. "Patient time costs associated with sensor-augmented insulin pump therapy for type 1 diabetes: results from the STAR 3 randomized trial." Med Decis Making 33.2 (February 2013): 215-224.
PMID
23128579
Source
pubmed
Published In
Medical Decision Making
Volume
33
Issue
2
Publish Date
2013
Start Page
215
End Page
224
DOI
10.1177/0272989X12464824

Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer.

INTRODUCTION: We describe the development and validation of the Patient-Reported Outcomes Measurement Information System(®) Sexual Function and Satisfaction (PROMIS(®) SexFS; National Institutes of Health) measures, version 1.0, for cancer populations. AIM: To develop a customizable self-report measure of sexual function and satisfaction as part of the U.S. National Institutes of Health PROMIS Network. METHODS: Our multidisciplinary working group followed a comprehensive protocol for developing psychometrically robust patient-reported outcome measures including qualitative (scale development) and quantitative (psychometric evaluation) development. We performed an extensive literature review, conducted 16 focus groups with cancer patients and multiple discussions with clinicians, and evaluated candidate items in cognitive testing with patients. We administered items to 819 cancer patients. Items were calibrated using item-response theory and evaluated for reliability and validity. MAIN OUTCOME MEASURES: The PROMIS SexFS measures, version 1.0, include 81 items in 11 domains: Interest in Sexual Activity, Lubrication, Vaginal Discomfort, Erectile Function, Global Satisfaction with Sex Life, Orgasm, Anal Discomfort, Therapeutic Aids, Sexual Activities, Interfering Factors, and Screener Questions. RESULTS: In addition to content validity (patients indicate that items cover important aspects of their experiences) and face validity (patients indicate that items measure sexual function and satisfaction), the measure shows evidence for discriminant validity (domains discriminate between groups expected to be different) and convergent validity (strong correlations between scores on PROMIS and scores on conceptually similar older measures of sexual function), as well as favorable test-retest reliability among people not expected to change (interclass correlations from two administrations of the instrument, 1 month apart). CONCLUSIONS: The PROMIS SexFS offers researchers a reliable and valid set of tools to measure self-reported sexual function and satisfaction among diverse men and women. The measures are customizable; researchers can select the relevant domains and items comprising those domains for their study.

Authors
Flynn, KE; Lin, L; Cyranowski, JM; Reeve, BB; Reese, JB; Jeffery, DD; Smith, AW; Porter, LS; Dombeck, CB; Bruner, DW; Keefe, FJ; Weinfurt, KP
MLA Citation
Flynn, KE, Lin, L, Cyranowski, JM, Reeve, BB, Reese, JB, Jeffery, DD, Smith, AW, Porter, LS, Dombeck, CB, Bruner, DW, Keefe, FJ, and Weinfurt, KP. "Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer." J Sex Med 10 Suppl 1 (February 2013): 43-52.
PMID
23387911
Source
epmc
Published In
The Journal of Sexual Medicine
Volume
10 Suppl 1
Publish Date
2013
Start Page
43
End Page
52
DOI
10.1111/j.1743-6109.2012.02995.x

Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer.

INTRODUCTION: We describe the development and validation of the Patient-Reported Outcomes Measurement Information System(®) Sexual Function and Satisfaction (PROMIS(®) SexFS; National Institutes of Health) measures, version 1.0, for cancer populations. AIM: To develop a customizable self-report measure of sexual function and satisfaction as part of the U.S. National Institutes of Health PROMIS Network. METHODS: Our multidisciplinary working group followed a comprehensive protocol for developing psychometrically robust patient-reported outcome measures including qualitative (scale development) and quantitative (psychometric evaluation) development. We performed an extensive literature review, conducted 16 focus groups with cancer patients and multiple discussions with clinicians, and evaluated candidate items in cognitive testing with patients. We administered items to 819 cancer patients. Items were calibrated using item-response theory and evaluated for reliability and validity. MAIN OUTCOME MEASURES: The PROMIS SexFS measures, version 1.0, include 81 items in 11 domains: Interest in Sexual Activity, Lubrication, Vaginal Discomfort, Erectile Function, Global Satisfaction with Sex Life, Orgasm, Anal Discomfort, Therapeutic Aids, Sexual Activities, Interfering Factors, and Screener Questions. RESULTS: In addition to content validity (patients indicate that items cover important aspects of their experiences) and face validity (patients indicate that items measure sexual function and satisfaction), the measure shows evidence for discriminant validity (domains discriminate between groups expected to be different) and convergent validity (strong correlations between scores on PROMIS and scores on conceptually similar older measures of sexual function), as well as favorable test-retest reliability among people not expected to change (interclass correlations from two administrations of the instrument, 1 month apart). CONCLUSIONS: The PROMIS SexFS offers researchers a reliable and valid set of tools to measure self-reported sexual function and satisfaction among diverse men and women. The measures are customizable; researchers can select the relevant domains and items comprising those domains for their study.

Authors
Flynn, KE; Lin, L; Cyranowski, JM; Reeve, BB; Reese, JB; Jeffery, DD; Smith, AW; Porter, LS; Dombeck, CB; Bruner, DW; Keefe, FJ; Weinfurt, KP
MLA Citation
Flynn, KE, Lin, L, Cyranowski, JM, Reeve, BB, Reese, JB, Jeffery, DD, Smith, AW, Porter, LS, Dombeck, CB, Bruner, DW, Keefe, FJ, and Weinfurt, KP. "Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer." J Sex Med 10 Suppl 1 (February 2013): 43-52.
PMID
23387911
Source
epmc
Published In
The Journal of Sexual Medicine
Volume
10 Suppl 1
Publish Date
2013
Start Page
43
End Page
52
DOI
10.1111/j.1743-6109.2012.02995.x

Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer.

INTRODUCTION: We describe the development and validation of the Patient-Reported Outcomes Measurement Information System(®) Sexual Function and Satisfaction (PROMIS(®) SexFS; National Institutes of Health) measures, version 1.0, for cancer populations. AIM: To develop a customizable self-report measure of sexual function and satisfaction as part of the U.S. National Institutes of Health PROMIS Network. METHODS: Our multidisciplinary working group followed a comprehensive protocol for developing psychometrically robust patient-reported outcome measures including qualitative (scale development) and quantitative (psychometric evaluation) development. We performed an extensive literature review, conducted 16 focus groups with cancer patients and multiple discussions with clinicians, and evaluated candidate items in cognitive testing with patients. We administered items to 819 cancer patients. Items were calibrated using item-response theory and evaluated for reliability and validity. MAIN OUTCOME MEASURES: The PROMIS SexFS measures, version 1.0, include 81 items in 11 domains: Interest in Sexual Activity, Lubrication, Vaginal Discomfort, Erectile Function, Global Satisfaction with Sex Life, Orgasm, Anal Discomfort, Therapeutic Aids, Sexual Activities, Interfering Factors, and Screener Questions. RESULTS: In addition to content validity (patients indicate that items cover important aspects of their experiences) and face validity (patients indicate that items measure sexual function and satisfaction), the measure shows evidence for discriminant validity (domains discriminate between groups expected to be different) and convergent validity (strong correlations between scores on PROMIS and scores on conceptually similar older measures of sexual function), as well as favorable test-retest reliability among people not expected to change (interclass correlations from two administrations of the instrument, 1 month apart). CONCLUSIONS: The PROMIS SexFS offers researchers a reliable and valid set of tools to measure self-reported sexual function and satisfaction among diverse men and women. The measures are customizable; researchers can select the relevant domains and items comprising those domains for their study.

Authors
Flynn, KE; Lin, L; Cyranowski, JM; Reeve, BB; Reese, JB; Jeffery, DD; Smith, AW; Porter, LS; Dombeck, CB; Bruner, DW; Keefe, FJ; Weinfurt, KP
MLA Citation
Flynn, KE, Lin, L, Cyranowski, JM, Reeve, BB, Reese, JB, Jeffery, DD, Smith, AW, Porter, LS, Dombeck, CB, Bruner, DW, Keefe, FJ, and Weinfurt, KP. "Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer." J Sex Med 10 Suppl 1 (February 2013): 43-52.
PMID
23387911
Source
epmc
Published In
The Journal of Sexual Medicine
Volume
10 Suppl 1
Publish Date
2013
Start Page
43
End Page
52
DOI
10.1111/j.1743-6109.2012.02995.x

Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer.

INTRODUCTION: We describe the development and validation of the Patient-Reported Outcomes Measurement Information System(®) Sexual Function and Satisfaction (PROMIS(®) SexFS; National Institutes of Health) measures, version 1.0, for cancer populations. AIM: To develop a customizable self-report measure of sexual function and satisfaction as part of the U.S. National Institutes of Health PROMIS Network. METHODS: Our multidisciplinary working group followed a comprehensive protocol for developing psychometrically robust patient-reported outcome measures including qualitative (scale development) and quantitative (psychometric evaluation) development. We performed an extensive literature review, conducted 16 focus groups with cancer patients and multiple discussions with clinicians, and evaluated candidate items in cognitive testing with patients. We administered items to 819 cancer patients. Items were calibrated using item-response theory and evaluated for reliability and validity. MAIN OUTCOME MEASURES: The PROMIS SexFS measures, version 1.0, include 81 items in 11 domains: Interest in Sexual Activity, Lubrication, Vaginal Discomfort, Erectile Function, Global Satisfaction with Sex Life, Orgasm, Anal Discomfort, Therapeutic Aids, Sexual Activities, Interfering Factors, and Screener Questions. RESULTS: In addition to content validity (patients indicate that items cover important aspects of their experiences) and face validity (patients indicate that items measure sexual function and satisfaction), the measure shows evidence for discriminant validity (domains discriminate between groups expected to be different) and convergent validity (strong correlations between scores on PROMIS and scores on conceptually similar older measures of sexual function), as well as favorable test-retest reliability among people not expected to change (interclass correlations from two administrations of the instrument, 1 month apart). CONCLUSIONS: The PROMIS SexFS offers researchers a reliable and valid set of tools to measure self-reported sexual function and satisfaction among diverse men and women. The measures are customizable; researchers can select the relevant domains and items comprising those domains for their study.

Authors
Flynn, KE; Lin, L; Cyranowski, JM; Reeve, BB; Reese, JB; Jeffery, DD; Smith, AW; Porter, LS; Dombeck, CB; Bruner, DW; Keefe, FJ; Weinfurt, KP
MLA Citation
Flynn, KE, Lin, L, Cyranowski, JM, Reeve, BB, Reese, JB, Jeffery, DD, Smith, AW, Porter, LS, Dombeck, CB, Bruner, DW, Keefe, FJ, and Weinfurt, KP. "Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer." J Sex Med 10 Suppl 1 (February 2013): 43-52.
PMID
23387911
Source
epmc
Published In
The Journal of Sexual Medicine
Volume
10 Suppl 1
Publish Date
2013
Start Page
43
End Page
52
DOI
10.1111/j.1743-6109.2012.02995.x

Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer.

INTRODUCTION: We describe the development and validation of the Patient-Reported Outcomes Measurement Information System(®) Sexual Function and Satisfaction (PROMIS(®) SexFS; National Institutes of Health) measures, version 1.0, for cancer populations. AIM: To develop a customizable self-report measure of sexual function and satisfaction as part of the U.S. National Institutes of Health PROMIS Network. METHODS: Our multidisciplinary working group followed a comprehensive protocol for developing psychometrically robust patient-reported outcome measures including qualitative (scale development) and quantitative (psychometric evaluation) development. We performed an extensive literature review, conducted 16 focus groups with cancer patients and multiple discussions with clinicians, and evaluated candidate items in cognitive testing with patients. We administered items to 819 cancer patients. Items were calibrated using item-response theory and evaluated for reliability and validity. MAIN OUTCOME MEASURES: The PROMIS SexFS measures, version 1.0, include 81 items in 11 domains: Interest in Sexual Activity, Lubrication, Vaginal Discomfort, Erectile Function, Global Satisfaction with Sex Life, Orgasm, Anal Discomfort, Therapeutic Aids, Sexual Activities, Interfering Factors, and Screener Questions. RESULTS: In addition to content validity (patients indicate that items cover important aspects of their experiences) and face validity (patients indicate that items measure sexual function and satisfaction), the measure shows evidence for discriminant validity (domains discriminate between groups expected to be different) and convergent validity (strong correlations between scores on PROMIS and scores on conceptually similar older measures of sexual function), as well as favorable test-retest reliability among people not expected to change (interclass correlations from two administrations of the instrument, 1 month apart). CONCLUSIONS: The PROMIS SexFS offers researchers a reliable and valid set of tools to measure self-reported sexual function and satisfaction among diverse men and women. The measures are customizable; researchers can select the relevant domains and items comprising those domains for their study.

Authors
Flynn, KE; Lin, L; Cyranowski, JM; Reeve, BB; Reese, JB; Jeffery, DD; Smith, AW; Porter, LS; Dombeck, CB; Bruner, DW; Keefe, FJ; Weinfurt, KP
MLA Citation
Flynn, KE, Lin, L, Cyranowski, JM, Reeve, BB, Reese, JB, Jeffery, DD, Smith, AW, Porter, LS, Dombeck, CB, Bruner, DW, Keefe, FJ, and Weinfurt, KP. "Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer." The journal of sexual medicine 10 Suppl 1 (February 2013): 43-52.
PMID
23387911
Source
epmc
Published In
The Journal of Sexual Medicine
Volume
10 Suppl 1
Publish Date
2013
Start Page
43
End Page
52
DOI
10.1111/j.1743-6109.2012.02995.x

Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer.

INTRODUCTION: We describe the development and validation of the Patient-Reported Outcomes Measurement Information System(®) Sexual Function and Satisfaction (PROMIS(®) SexFS; National Institutes of Health) measures, version 1.0, for cancer populations. AIM: To develop a customizable self-report measure of sexual function and satisfaction as part of the U.S. National Institutes of Health PROMIS Network. METHODS: Our multidisciplinary working group followed a comprehensive protocol for developing psychometrically robust patient-reported outcome measures including qualitative (scale development) and quantitative (psychometric evaluation) development. We performed an extensive literature review, conducted 16 focus groups with cancer patients and multiple discussions with clinicians, and evaluated candidate items in cognitive testing with patients. We administered items to 819 cancer patients. Items were calibrated using item-response theory and evaluated for reliability and validity. MAIN OUTCOME MEASURES: The PROMIS SexFS measures, version 1.0, include 81 items in 11 domains: Interest in Sexual Activity, Lubrication, Vaginal Discomfort, Erectile Function, Global Satisfaction with Sex Life, Orgasm, Anal Discomfort, Therapeutic Aids, Sexual Activities, Interfering Factors, and Screener Questions. RESULTS: In addition to content validity (patients indicate that items cover important aspects of their experiences) and face validity (patients indicate that items measure sexual function and satisfaction), the measure shows evidence for discriminant validity (domains discriminate between groups expected to be different) and convergent validity (strong correlations between scores on PROMIS and scores on conceptually similar older measures of sexual function), as well as favorable test-retest reliability among people not expected to change (interclass correlations from two administrations of the instrument, 1 month apart). CONCLUSIONS: The PROMIS SexFS offers researchers a reliable and valid set of tools to measure self-reported sexual function and satisfaction among diverse men and women. The measures are customizable; researchers can select the relevant domains and items comprising those domains for their study.

Authors
Flynn, KE; Lin, L; Cyranowski, JM; Reeve, BB; Reese, JB; Jeffery, DD; Smith, AW; Porter, LS; Dombeck, CB; Bruner, DW; Keefe, FJ; Weinfurt, KP
MLA Citation
Flynn, KE, Lin, L, Cyranowski, JM, Reeve, BB, Reese, JB, Jeffery, DD, Smith, AW, Porter, LS, Dombeck, CB, Bruner, DW, Keefe, FJ, and Weinfurt, KP. "Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer." The journal of sexual medicine 10 Suppl 1 (February 2013): 43-52.
PMID
23387911
Source
epmc
Published In
The Journal of Sexual Medicine
Volume
10 Suppl 1
Publish Date
2013
Start Page
43
End Page
52
DOI
10.1111/j.1743-6109.2012.02995.x

Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer.

INTRODUCTION: We describe the development and validation of the Patient-Reported Outcomes Measurement Information System(®) Sexual Function and Satisfaction (PROMIS(®) SexFS; National Institutes of Health) measures, version 1.0, for cancer populations. AIM: To develop a customizable self-report measure of sexual function and satisfaction as part of the U.S. National Institutes of Health PROMIS Network. METHODS: Our multidisciplinary working group followed a comprehensive protocol for developing psychometrically robust patient-reported outcome measures including qualitative (scale development) and quantitative (psychometric evaluation) development. We performed an extensive literature review, conducted 16 focus groups with cancer patients and multiple discussions with clinicians, and evaluated candidate items in cognitive testing with patients. We administered items to 819 cancer patients. Items were calibrated using item-response theory and evaluated for reliability and validity. MAIN OUTCOME MEASURES: The PROMIS SexFS measures, version 1.0, include 81 items in 11 domains: Interest in Sexual Activity, Lubrication, Vaginal Discomfort, Erectile Function, Global Satisfaction with Sex Life, Orgasm, Anal Discomfort, Therapeutic Aids, Sexual Activities, Interfering Factors, and Screener Questions. RESULTS: In addition to content validity (patients indicate that items cover important aspects of their experiences) and face validity (patients indicate that items measure sexual function and satisfaction), the measure shows evidence for discriminant validity (domains discriminate between groups expected to be different) and convergent validity (strong correlations between scores on PROMIS and scores on conceptually similar older measures of sexual function), as well as favorable test-retest reliability among people not expected to change (interclass correlations from two administrations of the instrument, 1 month apart). CONCLUSIONS: The PROMIS SexFS offers researchers a reliable and valid set of tools to measure self-reported sexual function and satisfaction among diverse men and women. The measures are customizable; researchers can select the relevant domains and items comprising those domains for their study.

Authors
Flynn, KE; Lin, L; Cyranowski, JM; Reeve, BB; Reese, JB; Jeffery, DD; Smith, AW; Porter, LS; Dombeck, CB; Bruner, DW; Keefe, FJ; Weinfurt, KP
MLA Citation
Flynn, KE, Lin, L, Cyranowski, JM, Reeve, BB, Reese, JB, Jeffery, DD, Smith, AW, Porter, LS, Dombeck, CB, Bruner, DW, Keefe, FJ, and Weinfurt, KP. "Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer." The journal of sexual medicine 10 Suppl 1 (February 2013): 43-52.
PMID
23387911
Source
epmc
Published In
The Journal of Sexual Medicine
Volume
10 Suppl 1
Publish Date
2013
Start Page
43
End Page
52
DOI
10.1111/j.1743-6109.2012.02995.x

Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer.

INTRODUCTION: We describe the development and validation of the Patient-Reported Outcomes Measurement Information System(®) Sexual Function and Satisfaction (PROMIS(®) SexFS; National Institutes of Health) measures, version 1.0, for cancer populations. AIM: To develop a customizable self-report measure of sexual function and satisfaction as part of the U.S. National Institutes of Health PROMIS Network. METHODS: Our multidisciplinary working group followed a comprehensive protocol for developing psychometrically robust patient-reported outcome measures including qualitative (scale development) and quantitative (psychometric evaluation) development. We performed an extensive literature review, conducted 16 focus groups with cancer patients and multiple discussions with clinicians, and evaluated candidate items in cognitive testing with patients. We administered items to 819 cancer patients. Items were calibrated using item-response theory and evaluated for reliability and validity. MAIN OUTCOME MEASURES: The PROMIS SexFS measures, version 1.0, include 81 items in 11 domains: Interest in Sexual Activity, Lubrication, Vaginal Discomfort, Erectile Function, Global Satisfaction with Sex Life, Orgasm, Anal Discomfort, Therapeutic Aids, Sexual Activities, Interfering Factors, and Screener Questions. RESULTS: In addition to content validity (patients indicate that items cover important aspects of their experiences) and face validity (patients indicate that items measure sexual function and satisfaction), the measure shows evidence for discriminant validity (domains discriminate between groups expected to be different) and convergent validity (strong correlations between scores on PROMIS and scores on conceptually similar older measures of sexual function), as well as favorable test-retest reliability among people not expected to change (interclass correlations from two administrations of the instrument, 1 month apart). CONCLUSIONS: The PROMIS SexFS offers researchers a reliable and valid set of tools to measure self-reported sexual function and satisfaction among diverse men and women. The measures are customizable; researchers can select the relevant domains and items comprising those domains for their study.

Authors
Flynn, KE; Lin, L; Cyranowski, JM; Reeve, BB; Reese, JB; Jeffery, DD; Smith, AW; Porter, LS; Dombeck, CB; Bruner, DW; Keefe, FJ; Weinfurt, KP
MLA Citation
Flynn, KE, Lin, L, Cyranowski, JM, Reeve, BB, Reese, JB, Jeffery, DD, Smith, AW, Porter, LS, Dombeck, CB, Bruner, DW, Keefe, FJ, and Weinfurt, KP. "Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer." The journal of sexual medicine 10 Suppl 1 (February 2013): 43-52.
PMID
23387911
Source
epmc
Published In
The Journal of Sexual Medicine
Volume
10 Suppl 1
Publish Date
2013
Start Page
43
End Page
52
DOI
10.1111/j.1743-6109.2012.02995.x

Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer.

INTRODUCTION: We describe the development and validation of the Patient-Reported Outcomes Measurement Information System(®) Sexual Function and Satisfaction (PROMIS(®) SexFS; National Institutes of Health) measures, version 1.0, for cancer populations. AIM: To develop a customizable self-report measure of sexual function and satisfaction as part of the U.S. National Institutes of Health PROMIS Network. METHODS: Our multidisciplinary working group followed a comprehensive protocol for developing psychometrically robust patient-reported outcome measures including qualitative (scale development) and quantitative (psychometric evaluation) development. We performed an extensive literature review, conducted 16 focus groups with cancer patients and multiple discussions with clinicians, and evaluated candidate items in cognitive testing with patients. We administered items to 819 cancer patients. Items were calibrated using item-response theory and evaluated for reliability and validity. MAIN OUTCOME MEASURES: The PROMIS SexFS measures, version 1.0, include 81 items in 11 domains: Interest in Sexual Activity, Lubrication, Vaginal Discomfort, Erectile Function, Global Satisfaction with Sex Life, Orgasm, Anal Discomfort, Therapeutic Aids, Sexual Activities, Interfering Factors, and Screener Questions. RESULTS: In addition to content validity (patients indicate that items cover important aspects of their experiences) and face validity (patients indicate that items measure sexual function and satisfaction), the measure shows evidence for discriminant validity (domains discriminate between groups expected to be different) and convergent validity (strong correlations between scores on PROMIS and scores on conceptually similar older measures of sexual function), as well as favorable test-retest reliability among people not expected to change (interclass correlations from two administrations of the instrument, 1 month apart). CONCLUSIONS: The PROMIS SexFS offers researchers a reliable and valid set of tools to measure self-reported sexual function and satisfaction among diverse men and women. The measures are customizable; researchers can select the relevant domains and items comprising those domains for their study.

Authors
Flynn, KE; Lin, L; Cyranowski, JM; Reeve, BB; Reese, JB; Jeffery, DD; Smith, AW; Porter, LS; Dombeck, CB; Bruner, DW; Keefe, FJ; Weinfurt, KP
MLA Citation
Flynn, KE, Lin, L, Cyranowski, JM, Reeve, BB, Reese, JB, Jeffery, DD, Smith, AW, Porter, LS, Dombeck, CB, Bruner, DW, Keefe, FJ, and Weinfurt, KP. "Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer." J Sex Med 10 Suppl 1 (February 2013): 43-52.
PMID
23387911
Source
epmc
Published In
The Journal of Sexual Medicine
Volume
10 Suppl 1
Publish Date
2013
Start Page
43
End Page
52
DOI
10.1111/j.1743-6109.2012.02995.x

Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer.

INTRODUCTION: We describe the development and validation of the Patient-Reported Outcomes Measurement Information System(®) Sexual Function and Satisfaction (PROMIS(®) SexFS; National Institutes of Health) measures, version 1.0, for cancer populations. AIM: To develop a customizable self-report measure of sexual function and satisfaction as part of the U.S. National Institutes of Health PROMIS Network. METHODS: Our multidisciplinary working group followed a comprehensive protocol for developing psychometrically robust patient-reported outcome measures including qualitative (scale development) and quantitative (psychometric evaluation) development. We performed an extensive literature review, conducted 16 focus groups with cancer patients and multiple discussions with clinicians, and evaluated candidate items in cognitive testing with patients. We administered items to 819 cancer patients. Items were calibrated using item-response theory and evaluated for reliability and validity. MAIN OUTCOME MEASURES: The PROMIS SexFS measures, version 1.0, include 81 items in 11 domains: Interest in Sexual Activity, Lubrication, Vaginal Discomfort, Erectile Function, Global Satisfaction with Sex Life, Orgasm, Anal Discomfort, Therapeutic Aids, Sexual Activities, Interfering Factors, and Screener Questions. RESULTS: In addition to content validity (patients indicate that items cover important aspects of their experiences) and face validity (patients indicate that items measure sexual function and satisfaction), the measure shows evidence for discriminant validity (domains discriminate between groups expected to be different) and convergent validity (strong correlations between scores on PROMIS and scores on conceptually similar older measures of sexual function), as well as favorable test-retest reliability among people not expected to change (interclass correlations from two administrations of the instrument, 1 month apart). CONCLUSIONS: The PROMIS SexFS offers researchers a reliable and valid set of tools to measure self-reported sexual function and satisfaction among diverse men and women. The measures are customizable; researchers can select the relevant domains and items comprising those domains for their study.

Authors
Flynn, KE; Lin, L; Cyranowski, JM; Reeve, BB; Reese, JB; Jeffery, DD; Smith, AW; Porter, LS; Dombeck, CB; Bruner, DW; Keefe, FJ; Weinfurt, KP
MLA Citation
Flynn, KE, Lin, L, Cyranowski, JM, Reeve, BB, Reese, JB, Jeffery, DD, Smith, AW, Porter, LS, Dombeck, CB, Bruner, DW, Keefe, FJ, and Weinfurt, KP. "Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer." J Sex Med 10 Suppl 1 (February 2013): 43-52.
PMID
23387911
Source
epmc
Published In
The Journal of Sexual Medicine
Volume
10 Suppl 1
Publish Date
2013
Start Page
43
End Page
52
DOI
10.1111/j.1743-6109.2012.02995.x

Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer.

INTRODUCTION: We describe the development and validation of the Patient-Reported Outcomes Measurement Information System(®) Sexual Function and Satisfaction (PROMIS(®) SexFS; National Institutes of Health) measures, version 1.0, for cancer populations. AIM: To develop a customizable self-report measure of sexual function and satisfaction as part of the U.S. National Institutes of Health PROMIS Network. METHODS: Our multidisciplinary working group followed a comprehensive protocol for developing psychometrically robust patient-reported outcome measures including qualitative (scale development) and quantitative (psychometric evaluation) development. We performed an extensive literature review, conducted 16 focus groups with cancer patients and multiple discussions with clinicians, and evaluated candidate items in cognitive testing with patients. We administered items to 819 cancer patients. Items were calibrated using item-response theory and evaluated for reliability and validity. MAIN OUTCOME MEASURES: The PROMIS SexFS measures, version 1.0, include 81 items in 11 domains: Interest in Sexual Activity, Lubrication, Vaginal Discomfort, Erectile Function, Global Satisfaction with Sex Life, Orgasm, Anal Discomfort, Therapeutic Aids, Sexual Activities, Interfering Factors, and Screener Questions. RESULTS: In addition to content validity (patients indicate that items cover important aspects of their experiences) and face validity (patients indicate that items measure sexual function and satisfaction), the measure shows evidence for discriminant validity (domains discriminate between groups expected to be different) and convergent validity (strong correlations between scores on PROMIS and scores on conceptually similar older measures of sexual function), as well as favorable test-retest reliability among people not expected to change (interclass correlations from two administrations of the instrument, 1 month apart). CONCLUSIONS: The PROMIS SexFS offers researchers a reliable and valid set of tools to measure self-reported sexual function and satisfaction among diverse men and women. The measures are customizable; researchers can select the relevant domains and items comprising those domains for their study.

Authors
Flynn, KE; Lin, L; Cyranowski, JM; Reeve, BB; Reese, JB; Jeffery, DD; Smith, AW; Porter, LS; Dombeck, CB; Bruner, DW; Keefe, FJ; Weinfurt, KP
MLA Citation
Flynn, KE, Lin, L, Cyranowski, JM, Reeve, BB, Reese, JB, Jeffery, DD, Smith, AW, Porter, LS, Dombeck, CB, Bruner, DW, Keefe, FJ, and Weinfurt, KP. "Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer." J Sex Med 10 Suppl 1 (February 2013): 43-52.
PMID
23387911
Source
epmc
Published In
The Journal of Sexual Medicine
Volume
10 Suppl 1
Publish Date
2013
Start Page
43
End Page
52
DOI
10.1111/j.1743-6109.2012.02995.x

Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer.

INTRODUCTION: We describe the development and validation of the Patient-Reported Outcomes Measurement Information System(®) Sexual Function and Satisfaction (PROMIS(®) SexFS; National Institutes of Health) measures, version 1.0, for cancer populations. AIM: To develop a customizable self-report measure of sexual function and satisfaction as part of the U.S. National Institutes of Health PROMIS Network. METHODS: Our multidisciplinary working group followed a comprehensive protocol for developing psychometrically robust patient-reported outcome measures including qualitative (scale development) and quantitative (psychometric evaluation) development. We performed an extensive literature review, conducted 16 focus groups with cancer patients and multiple discussions with clinicians, and evaluated candidate items in cognitive testing with patients. We administered items to 819 cancer patients. Items were calibrated using item-response theory and evaluated for reliability and validity. MAIN OUTCOME MEASURES: The PROMIS SexFS measures, version 1.0, include 81 items in 11 domains: Interest in Sexual Activity, Lubrication, Vaginal Discomfort, Erectile Function, Global Satisfaction with Sex Life, Orgasm, Anal Discomfort, Therapeutic Aids, Sexual Activities, Interfering Factors, and Screener Questions. RESULTS: In addition to content validity (patients indicate that items cover important aspects of their experiences) and face validity (patients indicate that items measure sexual function and satisfaction), the measure shows evidence for discriminant validity (domains discriminate between groups expected to be different) and convergent validity (strong correlations between scores on PROMIS and scores on conceptually similar older measures of sexual function), as well as favorable test-retest reliability among people not expected to change (interclass correlations from two administrations of the instrument, 1 month apart). CONCLUSIONS: The PROMIS SexFS offers researchers a reliable and valid set of tools to measure self-reported sexual function and satisfaction among diverse men and women. The measures are customizable; researchers can select the relevant domains and items comprising those domains for their study.

Authors
Flynn, KE; Lin, L; Cyranowski, JM; Reeve, BB; Reese, JB; Jeffery, DD; Smith, AW; Porter, LS; Dombeck, CB; Bruner, DW; Keefe, FJ; Weinfurt, KP
MLA Citation
Flynn, KE, Lin, L, Cyranowski, JM, Reeve, BB, Reese, JB, Jeffery, DD, Smith, AW, Porter, LS, Dombeck, CB, Bruner, DW, Keefe, FJ, and Weinfurt, KP. "Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer." J Sex Med 10 Suppl 1 (February 2013): 43-52.
PMID
23387911
Source
epmc
Published In
The Journal of Sexual Medicine
Volume
10 Suppl 1
Publish Date
2013
Start Page
43
End Page
52
DOI
10.1111/j.1743-6109.2012.02995.x

Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer.

INTRODUCTION: We describe the development and validation of the Patient-Reported Outcomes Measurement Information System(®) Sexual Function and Satisfaction (PROMIS(®) SexFS; National Institutes of Health) measures, version 1.0, for cancer populations. AIM: To develop a customizable self-report measure of sexual function and satisfaction as part of the U.S. National Institutes of Health PROMIS Network. METHODS: Our multidisciplinary working group followed a comprehensive protocol for developing psychometrically robust patient-reported outcome measures including qualitative (scale development) and quantitative (psychometric evaluation) development. We performed an extensive literature review, conducted 16 focus groups with cancer patients and multiple discussions with clinicians, and evaluated candidate items in cognitive testing with patients. We administered items to 819 cancer patients. Items were calibrated using item-response theory and evaluated for reliability and validity. MAIN OUTCOME MEASURES: The PROMIS SexFS measures, version 1.0, include 81 items in 11 domains: Interest in Sexual Activity, Lubrication, Vaginal Discomfort, Erectile Function, Global Satisfaction with Sex Life, Orgasm, Anal Discomfort, Therapeutic Aids, Sexual Activities, Interfering Factors, and Screener Questions. RESULTS: In addition to content validity (patients indicate that items cover important aspects of their experiences) and face validity (patients indicate that items measure sexual function and satisfaction), the measure shows evidence for discriminant validity (domains discriminate between groups expected to be different) and convergent validity (strong correlations between scores on PROMIS and scores on conceptually similar older measures of sexual function), as well as favorable test-retest reliability among people not expected to change (interclass correlations from two administrations of the instrument, 1 month apart). CONCLUSIONS: The PROMIS SexFS offers researchers a reliable and valid set of tools to measure self-reported sexual function and satisfaction among diverse men and women. The measures are customizable; researchers can select the relevant domains and items comprising those domains for their study.

Authors
Flynn, KE; Lin, L; Cyranowski, JM; Reeve, BB; Reese, JB; Jeffery, DD; Smith, AW; Porter, LS; Dombeck, CB; Bruner, DW; Keefe, FJ; Weinfurt, KP
MLA Citation
Flynn, KE, Lin, L, Cyranowski, JM, Reeve, BB, Reese, JB, Jeffery, DD, Smith, AW, Porter, LS, Dombeck, CB, Bruner, DW, Keefe, FJ, and Weinfurt, KP. "Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer." The journal of sexual medicine 10 Suppl 1 (February 2013): 43-52.
PMID
23387911
Source
epmc
Published In
The Journal of Sexual Medicine
Volume
10 Suppl 1
Publish Date
2013
Start Page
43
End Page
52
DOI
10.1111/j.1743-6109.2012.02995.x

Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer.

INTRODUCTION: We describe the development and validation of the Patient-Reported Outcomes Measurement Information System(®) Sexual Function and Satisfaction (PROMIS(®) SexFS; National Institutes of Health) measures, version 1.0, for cancer populations. AIM: To develop a customizable self-report measure of sexual function and satisfaction as part of the U.S. National Institutes of Health PROMIS Network. METHODS: Our multidisciplinary working group followed a comprehensive protocol for developing psychometrically robust patient-reported outcome measures including qualitative (scale development) and quantitative (psychometric evaluation) development. We performed an extensive literature review, conducted 16 focus groups with cancer patients and multiple discussions with clinicians, and evaluated candidate items in cognitive testing with patients. We administered items to 819 cancer patients. Items were calibrated using item-response theory and evaluated for reliability and validity. MAIN OUTCOME MEASURES: The PROMIS SexFS measures, version 1.0, include 81 items in 11 domains: Interest in Sexual Activity, Lubrication, Vaginal Discomfort, Erectile Function, Global Satisfaction with Sex Life, Orgasm, Anal Discomfort, Therapeutic Aids, Sexual Activities, Interfering Factors, and Screener Questions. RESULTS: In addition to content validity (patients indicate that items cover important aspects of their experiences) and face validity (patients indicate that items measure sexual function and satisfaction), the measure shows evidence for discriminant validity (domains discriminate between groups expected to be different) and convergent validity (strong correlations between scores on PROMIS and scores on conceptually similar older measures of sexual function), as well as favorable test-retest reliability among people not expected to change (interclass correlations from two administrations of the instrument, 1 month apart). CONCLUSIONS: The PROMIS SexFS offers researchers a reliable and valid set of tools to measure self-reported sexual function and satisfaction among diverse men and women. The measures are customizable; researchers can select the relevant domains and items comprising those domains for their study.

Authors
Flynn, KE; Lin, L; Cyranowski, JM; Reeve, BB; Reese, JB; Jeffery, DD; Smith, AW; Porter, LS; Dombeck, CB; Bruner, DW; Keefe, FJ; Weinfurt, KP
MLA Citation
Flynn, KE, Lin, L, Cyranowski, JM, Reeve, BB, Reese, JB, Jeffery, DD, Smith, AW, Porter, LS, Dombeck, CB, Bruner, DW, Keefe, FJ, and Weinfurt, KP. "Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer." The journal of sexual medicine 10 Suppl 1 (February 2013): 43-52.
PMID
23387911
Source
epmc
Published In
The Journal of Sexual Medicine
Volume
10 Suppl 1
Publish Date
2013
Start Page
43
End Page
52
DOI
10.1111/j.1743-6109.2012.02995.x

Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer.

INTRODUCTION: We describe the development and validation of the Patient-Reported Outcomes Measurement Information System(®) Sexual Function and Satisfaction (PROMIS(®) SexFS; National Institutes of Health) measures, version 1.0, for cancer populations. AIM: To develop a customizable self-report measure of sexual function and satisfaction as part of the U.S. National Institutes of Health PROMIS Network. METHODS: Our multidisciplinary working group followed a comprehensive protocol for developing psychometrically robust patient-reported outcome measures including qualitative (scale development) and quantitative (psychometric evaluation) development. We performed an extensive literature review, conducted 16 focus groups with cancer patients and multiple discussions with clinicians, and evaluated candidate items in cognitive testing with patients. We administered items to 819 cancer patients. Items were calibrated using item-response theory and evaluated for reliability and validity. MAIN OUTCOME MEASURES: The PROMIS SexFS measures, version 1.0, include 81 items in 11 domains: Interest in Sexual Activity, Lubrication, Vaginal Discomfort, Erectile Function, Global Satisfaction with Sex Life, Orgasm, Anal Discomfort, Therapeutic Aids, Sexual Activities, Interfering Factors, and Screener Questions. RESULTS: In addition to content validity (patients indicate that items cover important aspects of their experiences) and face validity (patients indicate that items measure sexual function and satisfaction), the measure shows evidence for discriminant validity (domains discriminate between groups expected to be different) and convergent validity (strong correlations between scores on PROMIS and scores on conceptually similar older measures of sexual function), as well as favorable test-retest reliability among people not expected to change (interclass correlations from two administrations of the instrument, 1 month apart). CONCLUSIONS: The PROMIS SexFS offers researchers a reliable and valid set of tools to measure self-reported sexual function and satisfaction among diverse men and women. The measures are customizable; researchers can select the relevant domains and items comprising those domains for their study.

Authors
Flynn, KE; Lin, L; Cyranowski, JM; Reeve, BB; Reese, JB; Jeffery, DD; Smith, AW; Porter, LS; Dombeck, CB; Bruner, DW; Keefe, FJ; Weinfurt, KP
MLA Citation
Flynn, KE, Lin, L, Cyranowski, JM, Reeve, BB, Reese, JB, Jeffery, DD, Smith, AW, Porter, LS, Dombeck, CB, Bruner, DW, Keefe, FJ, and Weinfurt, KP. "Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer." The journal of sexual medicine 10 Suppl 1 (February 2013): 43-52.
PMID
23387911
Source
epmc
Published In
The Journal of Sexual Medicine
Volume
10 Suppl 1
Publish Date
2013
Start Page
43
End Page
52
DOI
10.1111/j.1743-6109.2012.02995.x

Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer.

INTRODUCTION: We describe the development and validation of the Patient-Reported Outcomes Measurement Information System(®) Sexual Function and Satisfaction (PROMIS(®) SexFS; National Institutes of Health) measures, version 1.0, for cancer populations. AIM: To develop a customizable self-report measure of sexual function and satisfaction as part of the U.S. National Institutes of Health PROMIS Network. METHODS: Our multidisciplinary working group followed a comprehensive protocol for developing psychometrically robust patient-reported outcome measures including qualitative (scale development) and quantitative (psychometric evaluation) development. We performed an extensive literature review, conducted 16 focus groups with cancer patients and multiple discussions with clinicians, and evaluated candidate items in cognitive testing with patients. We administered items to 819 cancer patients. Items were calibrated using item-response theory and evaluated for reliability and validity. MAIN OUTCOME MEASURES: The PROMIS SexFS measures, version 1.0, include 81 items in 11 domains: Interest in Sexual Activity, Lubrication, Vaginal Discomfort, Erectile Function, Global Satisfaction with Sex Life, Orgasm, Anal Discomfort, Therapeutic Aids, Sexual Activities, Interfering Factors, and Screener Questions. RESULTS: In addition to content validity (patients indicate that items cover important aspects of their experiences) and face validity (patients indicate that items measure sexual function and satisfaction), the measure shows evidence for discriminant validity (domains discriminate between groups expected to be different) and convergent validity (strong correlations between scores on PROMIS and scores on conceptually similar older measures of sexual function), as well as favorable test-retest reliability among people not expected to change (interclass correlations from two administrations of the instrument, 1 month apart). CONCLUSIONS: The PROMIS SexFS offers researchers a reliable and valid set of tools to measure self-reported sexual function and satisfaction among diverse men and women. The measures are customizable; researchers can select the relevant domains and items comprising those domains for their study.

Authors
Flynn, KE; Lin, L; Cyranowski, JM; Reeve, BB; Reese, JB; Jeffery, DD; Smith, AW; Porter, LS; Dombeck, CB; Bruner, DW; Keefe, FJ; Weinfurt, KP
MLA Citation
Flynn, KE, Lin, L, Cyranowski, JM, Reeve, BB, Reese, JB, Jeffery, DD, Smith, AW, Porter, LS, Dombeck, CB, Bruner, DW, Keefe, FJ, and Weinfurt, KP. "Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer." The journal of sexual medicine 10 Suppl 1 (February 2013): 43-52.
PMID
23387911
Source
epmc
Published In
The Journal of Sexual Medicine
Volume
10 Suppl 1
Publish Date
2013
Start Page
43
End Page
52
DOI
10.1111/j.1743-6109.2012.02995.x

Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer.

INTRODUCTION: We describe the development and validation of the Patient-Reported Outcomes Measurement Information System(®) Sexual Function and Satisfaction (PROMIS(®) SexFS; National Institutes of Health) measures, version 1.0, for cancer populations. AIM: To develop a customizable self-report measure of sexual function and satisfaction as part of the U.S. National Institutes of Health PROMIS Network. METHODS: Our multidisciplinary working group followed a comprehensive protocol for developing psychometrically robust patient-reported outcome measures including qualitative (scale development) and quantitative (psychometric evaluation) development. We performed an extensive literature review, conducted 16 focus groups with cancer patients and multiple discussions with clinicians, and evaluated candidate items in cognitive testing with patients. We administered items to 819 cancer patients. Items were calibrated using item-response theory and evaluated for reliability and validity. MAIN OUTCOME MEASURES: The PROMIS SexFS measures, version 1.0, include 81 items in 11 domains: Interest in Sexual Activity, Lubrication, Vaginal Discomfort, Erectile Function, Global Satisfaction with Sex Life, Orgasm, Anal Discomfort, Therapeutic Aids, Sexual Activities, Interfering Factors, and Screener Questions. RESULTS: In addition to content validity (patients indicate that items cover important aspects of their experiences) and face validity (patients indicate that items measure sexual function and satisfaction), the measure shows evidence for discriminant validity (domains discriminate between groups expected to be different) and convergent validity (strong correlations between scores on PROMIS and scores on conceptually similar older measures of sexual function), as well as favorable test-retest reliability among people not expected to change (interclass correlations from two administrations of the instrument, 1 month apart). CONCLUSIONS: The PROMIS SexFS offers researchers a reliable and valid set of tools to measure self-reported sexual function and satisfaction among diverse men and women. The measures are customizable; researchers can select the relevant domains and items comprising those domains for their study.

Authors
Flynn, KE; Lin, L; Cyranowski, JM; Reeve, BB; Reese, JB; Jeffery, DD; Smith, AW; Porter, LS; Dombeck, CB; Bruner, DW; Keefe, FJ; Weinfurt, KP
MLA Citation
Flynn, KE, Lin, L, Cyranowski, JM, Reeve, BB, Reese, JB, Jeffery, DD, Smith, AW, Porter, LS, Dombeck, CB, Bruner, DW, Keefe, FJ, and Weinfurt, KP. "Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer." J Sex Med 10 Suppl 1 (February 2013): 43-52.
PMID
23387911
Source
pubmed
Published In
The Journal of Sexual Medicine
Volume
10 Suppl 1
Publish Date
2013
Start Page
43
End Page
52
DOI
10.1111/j.1743-6109.2012.02995.x

Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer.

INTRODUCTION: We describe the development and validation of the Patient-Reported Outcomes Measurement Information System(®) Sexual Function and Satisfaction (PROMIS(®) SexFS; National Institutes of Health) measures, version 1.0, for cancer populations. AIM: To develop a customizable self-report measure of sexual function and satisfaction as part of the U.S. National Institutes of Health PROMIS Network. METHODS: Our multidisciplinary working group followed a comprehensive protocol for developing psychometrically robust patient-reported outcome measures including qualitative (scale development) and quantitative (psychometric evaluation) development. We performed an extensive literature review, conducted 16 focus groups with cancer patients and multiple discussions with clinicians, and evaluated candidate items in cognitive testing with patients. We administered items to 819 cancer patients. Items were calibrated using item-response theory and evaluated for reliability and validity. MAIN OUTCOME MEASURES: The PROMIS SexFS measures, version 1.0, include 81 items in 11 domains: Interest in Sexual Activity, Lubrication, Vaginal Discomfort, Erectile Function, Global Satisfaction with Sex Life, Orgasm, Anal Discomfort, Therapeutic Aids, Sexual Activities, Interfering Factors, and Screener Questions. RESULTS: In addition to content validity (patients indicate that items cover important aspects of their experiences) and face validity (patients indicate that items measure sexual function and satisfaction), the measure shows evidence for discriminant validity (domains discriminate between groups expected to be different) and convergent validity (strong correlations between scores on PROMIS and scores on conceptually similar older measures of sexual function), as well as favorable test-retest reliability among people not expected to change (interclass correlations from two administrations of the instrument, 1 month apart). CONCLUSIONS: The PROMIS SexFS offers researchers a reliable and valid set of tools to measure self-reported sexual function and satisfaction among diverse men and women. The measures are customizable; researchers can select the relevant domains and items comprising those domains for their study.

Authors
Flynn, KE; Lin, L; Cyranowski, JM; Reeve, BB; Reese, JB; Jeffery, DD; Smith, AW; Porter, LS; Dombeck, CB; Bruner, DW; Keefe, FJ; Weinfurt, KP
MLA Citation
Flynn, KE, Lin, L, Cyranowski, JM, Reeve, BB, Reese, JB, Jeffery, DD, Smith, AW, Porter, LS, Dombeck, CB, Bruner, DW, Keefe, FJ, and Weinfurt, KP. "Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer." J Sex Med 10 Suppl 1 (February 2013): 43-52.
PMID
23387911
Source
pubmed
Published In
The Journal of Sexual Medicine
Volume
10 Suppl 1
Publish Date
2013
Start Page
43
End Page
52
DOI
10.1111/j.1743-6109.2012.02995.x

Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer.

INTRODUCTION: We describe the development and validation of the Patient-Reported Outcomes Measurement Information System(®) Sexual Function and Satisfaction (PROMIS(®) SexFS; National Institutes of Health) measures, version 1.0, for cancer populations. AIM: To develop a customizable self-report measure of sexual function and satisfaction as part of the U.S. National Institutes of Health PROMIS Network. METHODS: Our multidisciplinary working group followed a comprehensive protocol for developing psychometrically robust patient-reported outcome measures including qualitative (scale development) and quantitative (psychometric evaluation) development. We performed an extensive literature review, conducted 16 focus groups with cancer patients and multiple discussions with clinicians, and evaluated candidate items in cognitive testing with patients. We administered items to 819 cancer patients. Items were calibrated using item-response theory and evaluated for reliability and validity. MAIN OUTCOME MEASURES: The PROMIS SexFS measures, version 1.0, include 81 items in 11 domains: Interest in Sexual Activity, Lubrication, Vaginal Discomfort, Erectile Function, Global Satisfaction with Sex Life, Orgasm, Anal Discomfort, Therapeutic Aids, Sexual Activities, Interfering Factors, and Screener Questions. RESULTS: In addition to content validity (patients indicate that items cover important aspects of their experiences) and face validity (patients indicate that items measure sexual function and satisfaction), the measure shows evidence for discriminant validity (domains discriminate between groups expected to be different) and convergent validity (strong correlations between scores on PROMIS and scores on conceptually similar older measures of sexual function), as well as favorable test-retest reliability among people not expected to change (interclass correlations from two administrations of the instrument, 1 month apart). CONCLUSIONS: The PROMIS SexFS offers researchers a reliable and valid set of tools to measure self-reported sexual function and satisfaction among diverse men and women. The measures are customizable; researchers can select the relevant domains and items comprising those domains for their study.

Authors
Flynn, KE; Lin, L; Cyranowski, JM; Reeve, BB; Reese, JB; Jeffery, DD; Smith, AW; Porter, LS; Dombeck, CB; Bruner, DW; Keefe, FJ; Weinfurt, KP
MLA Citation
Flynn, KE, Lin, L, Cyranowski, JM, Reeve, BB, Reese, JB, Jeffery, DD, Smith, AW, Porter, LS, Dombeck, CB, Bruner, DW, Keefe, FJ, and Weinfurt, KP. "Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer." J Sex Med 10 Suppl 1 (February 2013): 43-52.
PMID
23387911
Source
pubmed
Published In
The Journal of Sexual Medicine
Volume
10 Suppl 1
Publish Date
2013
Start Page
43
End Page
52
DOI
10.1111/j.1743-6109.2012.02995.x

Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer.

INTRODUCTION: We describe the development and validation of the Patient-Reported Outcomes Measurement Information System(®) Sexual Function and Satisfaction (PROMIS(®) SexFS; National Institutes of Health) measures, version 1.0, for cancer populations. AIM: To develop a customizable self-report measure of sexual function and satisfaction as part of the U.S. National Institutes of Health PROMIS Network. METHODS: Our multidisciplinary working group followed a comprehensive protocol for developing psychometrically robust patient-reported outcome measures including qualitative (scale development) and quantitative (psychometric evaluation) development. We performed an extensive literature review, conducted 16 focus groups with cancer patients and multiple discussions with clinicians, and evaluated candidate items in cognitive testing with patients. We administered items to 819 cancer patients. Items were calibrated using item-response theory and evaluated for reliability and validity. MAIN OUTCOME MEASURES: The PROMIS SexFS measures, version 1.0, include 81 items in 11 domains: Interest in Sexual Activity, Lubrication, Vaginal Discomfort, Erectile Function, Global Satisfaction with Sex Life, Orgasm, Anal Discomfort, Therapeutic Aids, Sexual Activities, Interfering Factors, and Screener Questions. RESULTS: In addition to content validity (patients indicate that items cover important aspects of their experiences) and face validity (patients indicate that items measure sexual function and satisfaction), the measure shows evidence for discriminant validity (domains discriminate between groups expected to be different) and convergent validity (strong correlations between scores on PROMIS and scores on conceptually similar older measures of sexual function), as well as favorable test-retest reliability among people not expected to change (interclass correlations from two administrations of the instrument, 1 month apart). CONCLUSIONS: The PROMIS SexFS offers researchers a reliable and valid set of tools to measure self-reported sexual function and satisfaction among diverse men and women. The measures are customizable; researchers can select the relevant domains and items comprising those domains for their study.

Authors
Flynn, KE; Lin, L; Cyranowski, JM; Reeve, BB; Reese, JB; Jeffery, DD; Smith, AW; Porter, LS; Dombeck, CB; Bruner, DW; Keefe, FJ; Weinfurt, KP
MLA Citation
Flynn, KE, Lin, L, Cyranowski, JM, Reeve, BB, Reese, JB, Jeffery, DD, Smith, AW, Porter, LS, Dombeck, CB, Bruner, DW, Keefe, FJ, and Weinfurt, KP. "Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer." J Sex Med 10 Suppl 1 (February 2013): 43-52.
PMID
23387911
Source
pubmed
Published In
The Journal of Sexual Medicine
Volume
10 Suppl 1
Publish Date
2013
Start Page
43
End Page
52
DOI
10.1111/j.1743-6109.2012.02995.x

Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer.

INTRODUCTION: We describe the development and validation of the Patient-Reported Outcomes Measurement Information System(®) Sexual Function and Satisfaction (PROMIS(®) SexFS; National Institutes of Health) measures, version 1.0, for cancer populations. AIM: To develop a customizable self-report measure of sexual function and satisfaction as part of the U.S. National Institutes of Health PROMIS Network. METHODS: Our multidisciplinary working group followed a comprehensive protocol for developing psychometrically robust patient-reported outcome measures including qualitative (scale development) and quantitative (psychometric evaluation) development. We performed an extensive literature review, conducted 16 focus groups with cancer patients and multiple discussions with clinicians, and evaluated candidate items in cognitive testing with patients. We administered items to 819 cancer patients. Items were calibrated using item-response theory and evaluated for reliability and validity. MAIN OUTCOME MEASURES: The PROMIS SexFS measures, version 1.0, include 81 items in 11 domains: Interest in Sexual Activity, Lubrication, Vaginal Discomfort, Erectile Function, Global Satisfaction with Sex Life, Orgasm, Anal Discomfort, Therapeutic Aids, Sexual Activities, Interfering Factors, and Screener Questions. RESULTS: In addition to content validity (patients indicate that items cover important aspects of their experiences) and face validity (patients indicate that items measure sexual function and satisfaction), the measure shows evidence for discriminant validity (domains discriminate between groups expected to be different) and convergent validity (strong correlations between scores on PROMIS and scores on conceptually similar older measures of sexual function), as well as favorable test-retest reliability among people not expected to change (interclass correlations from two administrations of the instrument, 1 month apart). CONCLUSIONS: The PROMIS SexFS offers researchers a reliable and valid set of tools to measure self-reported sexual function and satisfaction among diverse men and women. The measures are customizable; researchers can select the relevant domains and items comprising those domains for their study.

Authors
Flynn, KE; Lin, L; Cyranowski, JM; Reeve, BB; Reese, JB; Jeffery, DD; Smith, AW; Porter, LS; Dombeck, CB; Bruner, DW; Keefe, FJ; Weinfurt, KP
MLA Citation
Flynn, KE, Lin, L, Cyranowski, JM, Reeve, BB, Reese, JB, Jeffery, DD, Smith, AW, Porter, LS, Dombeck, CB, Bruner, DW, Keefe, FJ, and Weinfurt, KP. "Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer." The journal of sexual medicine 10 Suppl 1 (February 2013): 43-52.
PMID
23387911
Source
pubmed
Published In
The Journal of Sexual Medicine
Volume
10 Suppl 1
Publish Date
2013
Start Page
43
End Page
52
DOI
10.1111/j.1743-6109.2012.02995.x

Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer.

INTRODUCTION: We describe the development and validation of the Patient-Reported Outcomes Measurement Information System(®) Sexual Function and Satisfaction (PROMIS(®) SexFS; National Institutes of Health) measures, version 1.0, for cancer populations. AIM: To develop a customizable self-report measure of sexual function and satisfaction as part of the U.S. National Institutes of Health PROMIS Network. METHODS: Our multidisciplinary working group followed a comprehensive protocol for developing psychometrically robust patient-reported outcome measures including qualitative (scale development) and quantitative (psychometric evaluation) development. We performed an extensive literature review, conducted 16 focus groups with cancer patients and multiple discussions with clinicians, and evaluated candidate items in cognitive testing with patients. We administered items to 819 cancer patients. Items were calibrated using item-response theory and evaluated for reliability and validity. MAIN OUTCOME MEASURES: The PROMIS SexFS measures, version 1.0, include 81 items in 11 domains: Interest in Sexual Activity, Lubrication, Vaginal Discomfort, Erectile Function, Global Satisfaction with Sex Life, Orgasm, Anal Discomfort, Therapeutic Aids, Sexual Activities, Interfering Factors, and Screener Questions. RESULTS: In addition to content validity (patients indicate that items cover important aspects of their experiences) and face validity (patients indicate that items measure sexual function and satisfaction), the measure shows evidence for discriminant validity (domains discriminate between groups expected to be different) and convergent validity (strong correlations between scores on PROMIS and scores on conceptually similar older measures of sexual function), as well as favorable test-retest reliability among people not expected to change (interclass correlations from two administrations of the instrument, 1 month apart). CONCLUSIONS: The PROMIS SexFS offers researchers a reliable and valid set of tools to measure self-reported sexual function and satisfaction among diverse men and women. The measures are customizable; researchers can select the relevant domains and items comprising those domains for their study.

Authors
Flynn, KE; Lin, L; Cyranowski, JM; Reeve, BB; Reese, JB; Jeffery, DD; Smith, AW; Porter, LS; Dombeck, CB; Bruner, DW; Keefe, FJ; Weinfurt, KP
MLA Citation
Flynn, KE, Lin, L, Cyranowski, JM, Reeve, BB, Reese, JB, Jeffery, DD, Smith, AW, Porter, LS, Dombeck, CB, Bruner, DW, Keefe, FJ, and Weinfurt, KP. "Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer." The journal of sexual medicine 10 Suppl 1 (February 2013): 43-52.
PMID
23387911
Source
pubmed
Published In
The Journal of Sexual Medicine
Volume
10 Suppl 1
Publish Date
2013
Start Page
43
End Page
52
DOI
10.1111/j.1743-6109.2012.02995.x

Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer.

INTRODUCTION: We describe the development and validation of the Patient-Reported Outcomes Measurement Information System(®) Sexual Function and Satisfaction (PROMIS(®) SexFS; National Institutes of Health) measures, version 1.0, for cancer populations. AIM: To develop a customizable self-report measure of sexual function and satisfaction as part of the U.S. National Institutes of Health PROMIS Network. METHODS: Our multidisciplinary working group followed a comprehensive protocol for developing psychometrically robust patient-reported outcome measures including qualitative (scale development) and quantitative (psychometric evaluation) development. We performed an extensive literature review, conducted 16 focus groups with cancer patients and multiple discussions with clinicians, and evaluated candidate items in cognitive testing with patients. We administered items to 819 cancer patients. Items were calibrated using item-response theory and evaluated for reliability and validity. MAIN OUTCOME MEASURES: The PROMIS SexFS measures, version 1.0, include 81 items in 11 domains: Interest in Sexual Activity, Lubrication, Vaginal Discomfort, Erectile Function, Global Satisfaction with Sex Life, Orgasm, Anal Discomfort, Therapeutic Aids, Sexual Activities, Interfering Factors, and Screener Questions. RESULTS: In addition to content validity (patients indicate that items cover important aspects of their experiences) and face validity (patients indicate that items measure sexual function and satisfaction), the measure shows evidence for discriminant validity (domains discriminate between groups expected to be different) and convergent validity (strong correlations between scores on PROMIS and scores on conceptually similar older measures of sexual function), as well as favorable test-retest reliability among people not expected to change (interclass correlations from two administrations of the instrument, 1 month apart). CONCLUSIONS: The PROMIS SexFS offers researchers a reliable and valid set of tools to measure self-reported sexual function and satisfaction among diverse men and women. The measures are customizable; researchers can select the relevant domains and items comprising those domains for their study.

Authors
Flynn, KE; Lin, L; Cyranowski, JM; Reeve, BB; Reese, JB; Jeffery, DD; Smith, AW; Porter, LS; Dombeck, CB; Bruner, DW; Keefe, FJ; Weinfurt, KP
MLA Citation
Flynn, KE, Lin, L, Cyranowski, JM, Reeve, BB, Reese, JB, Jeffery, DD, Smith, AW, Porter, LS, Dombeck, CB, Bruner, DW, Keefe, FJ, and Weinfurt, KP. "Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer." The journal of sexual medicine 10 Suppl 1 (February 2013): 43-52.
PMID
23387911
Source
pubmed
Published In
The Journal of Sexual Medicine
Volume
10 Suppl 1
Publish Date
2013
Start Page
43
End Page
52
DOI
10.1111/j.1743-6109.2012.02995.x

Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer.

INTRODUCTION: We describe the development and validation of the Patient-Reported Outcomes Measurement Information System(®) Sexual Function and Satisfaction (PROMIS(®) SexFS; National Institutes of Health) measures, version 1.0, for cancer populations. AIM: To develop a customizable self-report measure of sexual function and satisfaction as part of the U.S. National Institutes of Health PROMIS Network. METHODS: Our multidisciplinary working group followed a comprehensive protocol for developing psychometrically robust patient-reported outcome measures including qualitative (scale development) and quantitative (psychometric evaluation) development. We performed an extensive literature review, conducted 16 focus groups with cancer patients and multiple discussions with clinicians, and evaluated candidate items in cognitive testing with patients. We administered items to 819 cancer patients. Items were calibrated using item-response theory and evaluated for reliability and validity. MAIN OUTCOME MEASURES: The PROMIS SexFS measures, version 1.0, include 81 items in 11 domains: Interest in Sexual Activity, Lubrication, Vaginal Discomfort, Erectile Function, Global Satisfaction with Sex Life, Orgasm, Anal Discomfort, Therapeutic Aids, Sexual Activities, Interfering Factors, and Screener Questions. RESULTS: In addition to content validity (patients indicate that items cover important aspects of their experiences) and face validity (patients indicate that items measure sexual function and satisfaction), the measure shows evidence for discriminant validity (domains discriminate between groups expected to be different) and convergent validity (strong correlations between scores on PROMIS and scores on conceptually similar older measures of sexual function), as well as favorable test-retest reliability among people not expected to change (interclass correlations from two administrations of the instrument, 1 month apart). CONCLUSIONS: The PROMIS SexFS offers researchers a reliable and valid set of tools to measure self-reported sexual function and satisfaction among diverse men and women. The measures are customizable; researchers can select the relevant domains and items comprising those domains for their study.

Authors
Flynn, KE; Lin, L; Cyranowski, JM; Reeve, BB; Reese, JB; Jeffery, DD; Smith, AW; Porter, LS; Dombeck, CB; Bruner, DW; Keefe, FJ; Weinfurt, KP
MLA Citation
Flynn, KE, Lin, L, Cyranowski, JM, Reeve, BB, Reese, JB, Jeffery, DD, Smith, AW, Porter, LS, Dombeck, CB, Bruner, DW, Keefe, FJ, and Weinfurt, KP. "Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer." The journal of sexual medicine 10 Suppl 1 (February 2013): 43-52.
PMID
23387911
Source
pubmed
Published In
The Journal of Sexual Medicine
Volume
10 Suppl 1
Publish Date
2013
Start Page
43
End Page
52
DOI
10.1111/j.1743-6109.2012.02995.x

Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer.

INTRODUCTION: We describe the development and validation of the Patient-Reported Outcomes Measurement Information System(®) Sexual Function and Satisfaction (PROMIS(®) SexFS; National Institutes of Health) measures, version 1.0, for cancer populations. AIM: To develop a customizable self-report measure of sexual function and satisfaction as part of the U.S. National Institutes of Health PROMIS Network. METHODS: Our multidisciplinary working group followed a comprehensive protocol for developing psychometrically robust patient-reported outcome measures including qualitative (scale development) and quantitative (psychometric evaluation) development. We performed an extensive literature review, conducted 16 focus groups with cancer patients and multiple discussions with clinicians, and evaluated candidate items in cognitive testing with patients. We administered items to 819 cancer patients. Items were calibrated using item-response theory and evaluated for reliability and validity. MAIN OUTCOME MEASURES: The PROMIS SexFS measures, version 1.0, include 81 items in 11 domains: Interest in Sexual Activity, Lubrication, Vaginal Discomfort, Erectile Function, Global Satisfaction with Sex Life, Orgasm, Anal Discomfort, Therapeutic Aids, Sexual Activities, Interfering Factors, and Screener Questions. RESULTS: In addition to content validity (patients indicate that items cover important aspects of their experiences) and face validity (patients indicate that items measure sexual function and satisfaction), the measure shows evidence for discriminant validity (domains discriminate between groups expected to be different) and convergent validity (strong correlations between scores on PROMIS and scores on conceptually similar older measures of sexual function), as well as favorable test-retest reliability among people not expected to change (interclass correlations from two administrations of the instrument, 1 month apart). CONCLUSIONS: The PROMIS SexFS offers researchers a reliable and valid set of tools to measure self-reported sexual function and satisfaction among diverse men and women. The measures are customizable; researchers can select the relevant domains and items comprising those domains for their study.

Authors
Flynn, KE; Lin, L; Cyranowski, JM; Reeve, BB; Reese, JB; Jeffery, DD; Smith, AW; Porter, LS; Dombeck, CB; Bruner, DW; Keefe, FJ; Weinfurt, KP
MLA Citation
Flynn, KE, Lin, L, Cyranowski, JM, Reeve, BB, Reese, JB, Jeffery, DD, Smith, AW, Porter, LS, Dombeck, CB, Bruner, DW, Keefe, FJ, and Weinfurt, KP. "Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer." J Sex Med 10 Suppl 1 (February 2013): 43-52.
PMID
23387911
Source
pubmed
Published In
The Journal of Sexual Medicine
Volume
10 Suppl 1
Publish Date
2013
Start Page
43
End Page
52
DOI
10.1111/j.1743-6109.2012.02995.x

Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer.

INTRODUCTION: We describe the development and validation of the Patient-Reported Outcomes Measurement Information System(®) Sexual Function and Satisfaction (PROMIS(®) SexFS; National Institutes of Health) measures, version 1.0, for cancer populations. AIM: To develop a customizable self-report measure of sexual function and satisfaction as part of the U.S. National Institutes of Health PROMIS Network. METHODS: Our multidisciplinary working group followed a comprehensive protocol for developing psychometrically robust patient-reported outcome measures including qualitative (scale development) and quantitative (psychometric evaluation) development. We performed an extensive literature review, conducted 16 focus groups with cancer patients and multiple discussions with clinicians, and evaluated candidate items in cognitive testing with patients. We administered items to 819 cancer patients. Items were calibrated using item-response theory and evaluated for reliability and validity. MAIN OUTCOME MEASURES: The PROMIS SexFS measures, version 1.0, include 81 items in 11 domains: Interest in Sexual Activity, Lubrication, Vaginal Discomfort, Erectile Function, Global Satisfaction with Sex Life, Orgasm, Anal Discomfort, Therapeutic Aids, Sexual Activities, Interfering Factors, and Screener Questions. RESULTS: In addition to content validity (patients indicate that items cover important aspects of their experiences) and face validity (patients indicate that items measure sexual function and satisfaction), the measure shows evidence for discriminant validity (domains discriminate between groups expected to be different) and convergent validity (strong correlations between scores on PROMIS and scores on conceptually similar older measures of sexual function), as well as favorable test-retest reliability among people not expected to change (interclass correlations from two administrations of the instrument, 1 month apart). CONCLUSIONS: The PROMIS SexFS offers researchers a reliable and valid set of tools to measure self-reported sexual function and satisfaction among diverse men and women. The measures are customizable; researchers can select the relevant domains and items comprising those domains for their study.

Authors
Flynn, KE; Lin, L; Cyranowski, JM; Reeve, BB; Reese, JB; Jeffery, DD; Smith, AW; Porter, LS; Dombeck, CB; Bruner, DW; Keefe, FJ; Weinfurt, KP
MLA Citation
Flynn, KE, Lin, L, Cyranowski, JM, Reeve, BB, Reese, JB, Jeffery, DD, Smith, AW, Porter, LS, Dombeck, CB, Bruner, DW, Keefe, FJ, and Weinfurt, KP. "Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer." J Sex Med 10 Suppl 1 (February 2013): 43-52.
PMID
23387911
Source
pubmed
Published In
The Journal of Sexual Medicine
Volume
10 Suppl 1
Publish Date
2013
Start Page
43
End Page
52
DOI
10.1111/j.1743-6109.2012.02995.x

Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer.

INTRODUCTION: We describe the development and validation of the Patient-Reported Outcomes Measurement Information System(®) Sexual Function and Satisfaction (PROMIS(®) SexFS; National Institutes of Health) measures, version 1.0, for cancer populations. AIM: To develop a customizable self-report measure of sexual function and satisfaction as part of the U.S. National Institutes of Health PROMIS Network. METHODS: Our multidisciplinary working group followed a comprehensive protocol for developing psychometrically robust patient-reported outcome measures including qualitative (scale development) and quantitative (psychometric evaluation) development. We performed an extensive literature review, conducted 16 focus groups with cancer patients and multiple discussions with clinicians, and evaluated candidate items in cognitive testing with patients. We administered items to 819 cancer patients. Items were calibrated using item-response theory and evaluated for reliability and validity. MAIN OUTCOME MEASURES: The PROMIS SexFS measures, version 1.0, include 81 items in 11 domains: Interest in Sexual Activity, Lubrication, Vaginal Discomfort, Erectile Function, Global Satisfaction with Sex Life, Orgasm, Anal Discomfort, Therapeutic Aids, Sexual Activities, Interfering Factors, and Screener Questions. RESULTS: In addition to content validity (patients indicate that items cover important aspects of their experiences) and face validity (patients indicate that items measure sexual function and satisfaction), the measure shows evidence for discriminant validity (domains discriminate between groups expected to be different) and convergent validity (strong correlations between scores on PROMIS and scores on conceptually similar older measures of sexual function), as well as favorable test-retest reliability among people not expected to change (interclass correlations from two administrations of the instrument, 1 month apart). CONCLUSIONS: The PROMIS SexFS offers researchers a reliable and valid set of tools to measure self-reported sexual function and satisfaction among diverse men and women. The measures are customizable; researchers can select the relevant domains and items comprising those domains for their study.

Authors
Flynn, KE; Lin, L; Cyranowski, JM; Reeve, BB; Reese, JB; Jeffery, DD; Smith, AW; Porter, LS; Dombeck, CB; Bruner, DW; Keefe, FJ; Weinfurt, KP
MLA Citation
Flynn, KE, Lin, L, Cyranowski, JM, Reeve, BB, Reese, JB, Jeffery, DD, Smith, AW, Porter, LS, Dombeck, CB, Bruner, DW, Keefe, FJ, and Weinfurt, KP. "Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer." J Sex Med 10 Suppl 1 (February 2013): 43-52.
PMID
23387911
Source
pubmed
Published In
The Journal of Sexual Medicine
Volume
10 Suppl 1
Publish Date
2013
Start Page
43
End Page
52
DOI
10.1111/j.1743-6109.2012.02995.x

Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer.

INTRODUCTION: We describe the development and validation of the Patient-Reported Outcomes Measurement Information System(®) Sexual Function and Satisfaction (PROMIS(®) SexFS; National Institutes of Health) measures, version 1.0, for cancer populations. AIM: To develop a customizable self-report measure of sexual function and satisfaction as part of the U.S. National Institutes of Health PROMIS Network. METHODS: Our multidisciplinary working group followed a comprehensive protocol for developing psychometrically robust patient-reported outcome measures including qualitative (scale development) and quantitative (psychometric evaluation) development. We performed an extensive literature review, conducted 16 focus groups with cancer patients and multiple discussions with clinicians, and evaluated candidate items in cognitive testing with patients. We administered items to 819 cancer patients. Items were calibrated using item-response theory and evaluated for reliability and validity. MAIN OUTCOME MEASURES: The PROMIS SexFS measures, version 1.0, include 81 items in 11 domains: Interest in Sexual Activity, Lubrication, Vaginal Discomfort, Erectile Function, Global Satisfaction with Sex Life, Orgasm, Anal Discomfort, Therapeutic Aids, Sexual Activities, Interfering Factors, and Screener Questions. RESULTS: In addition to content validity (patients indicate that items cover important aspects of their experiences) and face validity (patients indicate that items measure sexual function and satisfaction), the measure shows evidence for discriminant validity (domains discriminate between groups expected to be different) and convergent validity (strong correlations between scores on PROMIS and scores on conceptually similar older measures of sexual function), as well as favorable test-retest reliability among people not expected to change (interclass correlations from two administrations of the instrument, 1 month apart). CONCLUSIONS: The PROMIS SexFS offers researchers a reliable and valid set of tools to measure self-reported sexual function and satisfaction among diverse men and women. The measures are customizable; researchers can select the relevant domains and items comprising those domains for their study.

Authors
Flynn, KE; Lin, L; Cyranowski, JM; Reeve, BB; Reese, JB; Jeffery, DD; Smith, AW; Porter, LS; Dombeck, CB; Bruner, DW; Keefe, FJ; Weinfurt, KP
MLA Citation
Flynn, KE, Lin, L, Cyranowski, JM, Reeve, BB, Reese, JB, Jeffery, DD, Smith, AW, Porter, LS, Dombeck, CB, Bruner, DW, Keefe, FJ, and Weinfurt, KP. "Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer." J Sex Med 10 Suppl 1 (February 2013): 43-52.
PMID
23387911
Source
pubmed
Published In
The Journal of Sexual Medicine
Volume
10 Suppl 1
Publish Date
2013
Start Page
43
End Page
52
DOI
10.1111/j.1743-6109.2012.02995.x

Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer.

INTRODUCTION: We describe the development and validation of the Patient-Reported Outcomes Measurement Information System(®) Sexual Function and Satisfaction (PROMIS(®) SexFS; National Institutes of Health) measures, version 1.0, for cancer populations. AIM: To develop a customizable self-report measure of sexual function and satisfaction as part of the U.S. National Institutes of Health PROMIS Network. METHODS: Our multidisciplinary working group followed a comprehensive protocol for developing psychometrically robust patient-reported outcome measures including qualitative (scale development) and quantitative (psychometric evaluation) development. We performed an extensive literature review, conducted 16 focus groups with cancer patients and multiple discussions with clinicians, and evaluated candidate items in cognitive testing with patients. We administered items to 819 cancer patients. Items were calibrated using item-response theory and evaluated for reliability and validity. MAIN OUTCOME MEASURES: The PROMIS SexFS measures, version 1.0, include 81 items in 11 domains: Interest in Sexual Activity, Lubrication, Vaginal Discomfort, Erectile Function, Global Satisfaction with Sex Life, Orgasm, Anal Discomfort, Therapeutic Aids, Sexual Activities, Interfering Factors, and Screener Questions. RESULTS: In addition to content validity (patients indicate that items cover important aspects of their experiences) and face validity (patients indicate that items measure sexual function and satisfaction), the measure shows evidence for discriminant validity (domains discriminate between groups expected to be different) and convergent validity (strong correlations between scores on PROMIS and scores on conceptually similar older measures of sexual function), as well as favorable test-retest reliability among people not expected to change (interclass correlations from two administrations of the instrument, 1 month apart). CONCLUSIONS: The PROMIS SexFS offers researchers a reliable and valid set of tools to measure self-reported sexual function and satisfaction among diverse men and women. The measures are customizable; researchers can select the relevant domains and items comprising those domains for their study.

Authors
Flynn, KE; Lin, L; Cyranowski, JM; Reeve, BB; Reese, JB; Jeffery, DD; Smith, AW; Porter, LS; Dombeck, CB; Bruner, DW; Keefe, FJ; Weinfurt, KP
MLA Citation
Flynn, KE, Lin, L, Cyranowski, JM, Reeve, BB, Reese, JB, Jeffery, DD, Smith, AW, Porter, LS, Dombeck, CB, Bruner, DW, Keefe, FJ, and Weinfurt, KP. "Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer." The journal of sexual medicine 10 Suppl 1 (February 2013): 43-52.
PMID
23387911
Source
pubmed
Published In
The Journal of Sexual Medicine
Volume
10 Suppl 1
Publish Date
2013
Start Page
43
End Page
52
DOI
10.1111/j.1743-6109.2012.02995.x

Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer.

INTRODUCTION: We describe the development and validation of the Patient-Reported Outcomes Measurement Information System(®) Sexual Function and Satisfaction (PROMIS(®) SexFS; National Institutes of Health) measures, version 1.0, for cancer populations. AIM: To develop a customizable self-report measure of sexual function and satisfaction as part of the U.S. National Institutes of Health PROMIS Network. METHODS: Our multidisciplinary working group followed a comprehensive protocol for developing psychometrically robust patient-reported outcome measures including qualitative (scale development) and quantitative (psychometric evaluation) development. We performed an extensive literature review, conducted 16 focus groups with cancer patients and multiple discussions with clinicians, and evaluated candidate items in cognitive testing with patients. We administered items to 819 cancer patients. Items were calibrated using item-response theory and evaluated for reliability and validity. MAIN OUTCOME MEASURES: The PROMIS SexFS measures, version 1.0, include 81 items in 11 domains: Interest in Sexual Activity, Lubrication, Vaginal Discomfort, Erectile Function, Global Satisfaction with Sex Life, Orgasm, Anal Discomfort, Therapeutic Aids, Sexual Activities, Interfering Factors, and Screener Questions. RESULTS: In addition to content validity (patients indicate that items cover important aspects of their experiences) and face validity (patients indicate that items measure sexual function and satisfaction), the measure shows evidence for discriminant validity (domains discriminate between groups expected to be different) and convergent validity (strong correlations between scores on PROMIS and scores on conceptually similar older measures of sexual function), as well as favorable test-retest reliability among people not expected to change (interclass correlations from two administrations of the instrument, 1 month apart). CONCLUSIONS: The PROMIS SexFS offers researchers a reliable and valid set of tools to measure self-reported sexual function and satisfaction among diverse men and women. The measures are customizable; researchers can select the relevant domains and items comprising those domains for their study.

Authors
Flynn, KE; Lin, L; Cyranowski, JM; Reeve, BB; Reese, JB; Jeffery, DD; Smith, AW; Porter, LS; Dombeck, CB; Bruner, DW; Keefe, FJ; Weinfurt, KP
MLA Citation
Flynn, KE, Lin, L, Cyranowski, JM, Reeve, BB, Reese, JB, Jeffery, DD, Smith, AW, Porter, LS, Dombeck, CB, Bruner, DW, Keefe, FJ, and Weinfurt, KP. "Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer." The journal of sexual medicine 10 Suppl 1 (February 2013): 43-52.
PMID
23387911
Source
pubmed
Published In
The Journal of Sexual Medicine
Volume
10 Suppl 1
Publish Date
2013
Start Page
43
End Page
52
DOI
10.1111/j.1743-6109.2012.02995.x

Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer.

INTRODUCTION: We describe the development and validation of the Patient-Reported Outcomes Measurement Information System(®) Sexual Function and Satisfaction (PROMIS(®) SexFS; National Institutes of Health) measures, version 1.0, for cancer populations. AIM: To develop a customizable self-report measure of sexual function and satisfaction as part of the U.S. National Institutes of Health PROMIS Network. METHODS: Our multidisciplinary working group followed a comprehensive protocol for developing psychometrically robust patient-reported outcome measures including qualitative (scale development) and quantitative (psychometric evaluation) development. We performed an extensive literature review, conducted 16 focus groups with cancer patients and multiple discussions with clinicians, and evaluated candidate items in cognitive testing with patients. We administered items to 819 cancer patients. Items were calibrated using item-response theory and evaluated for reliability and validity. MAIN OUTCOME MEASURES: The PROMIS SexFS measures, version 1.0, include 81 items in 11 domains: Interest in Sexual Activity, Lubrication, Vaginal Discomfort, Erectile Function, Global Satisfaction with Sex Life, Orgasm, Anal Discomfort, Therapeutic Aids, Sexual Activities, Interfering Factors, and Screener Questions. RESULTS: In addition to content validity (patients indicate that items cover important aspects of their experiences) and face validity (patients indicate that items measure sexual function and satisfaction), the measure shows evidence for discriminant validity (domains discriminate between groups expected to be different) and convergent validity (strong correlations between scores on PROMIS and scores on conceptually similar older measures of sexual function), as well as favorable test-retest reliability among people not expected to change (interclass correlations from two administrations of the instrument, 1 month apart). CONCLUSIONS: The PROMIS SexFS offers researchers a reliable and valid set of tools to measure self-reported sexual function and satisfaction among diverse men and women. The measures are customizable; researchers can select the relevant domains and items comprising those domains for their study.

Authors
Flynn, KE; Lin, L; Cyranowski, JM; Reeve, BB; Reese, JB; Jeffery, DD; Smith, AW; Porter, LS; Dombeck, CB; Bruner, DW; Keefe, FJ; Weinfurt, KP
MLA Citation
Flynn, KE, Lin, L, Cyranowski, JM, Reeve, BB, Reese, JB, Jeffery, DD, Smith, AW, Porter, LS, Dombeck, CB, Bruner, DW, Keefe, FJ, and Weinfurt, KP. "Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer." The journal of sexual medicine 10 Suppl 1 (February 2013): 43-52.
PMID
23387911
Source
pubmed
Published In
The Journal of Sexual Medicine
Volume
10 Suppl 1
Publish Date
2013
Start Page
43
End Page
52
DOI
10.1111/j.1743-6109.2012.02995.x

Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer.

INTRODUCTION: We describe the development and validation of the Patient-Reported Outcomes Measurement Information System(®) Sexual Function and Satisfaction (PROMIS(®) SexFS; National Institutes of Health) measures, version 1.0, for cancer populations. AIM: To develop a customizable self-report measure of sexual function and satisfaction as part of the U.S. National Institutes of Health PROMIS Network. METHODS: Our multidisciplinary working group followed a comprehensive protocol for developing psychometrically robust patient-reported outcome measures including qualitative (scale development) and quantitative (psychometric evaluation) development. We performed an extensive literature review, conducted 16 focus groups with cancer patients and multiple discussions with clinicians, and evaluated candidate items in cognitive testing with patients. We administered items to 819 cancer patients. Items were calibrated using item-response theory and evaluated for reliability and validity. MAIN OUTCOME MEASURES: The PROMIS SexFS measures, version 1.0, include 81 items in 11 domains: Interest in Sexual Activity, Lubrication, Vaginal Discomfort, Erectile Function, Global Satisfaction with Sex Life, Orgasm, Anal Discomfort, Therapeutic Aids, Sexual Activities, Interfering Factors, and Screener Questions. RESULTS: In addition to content validity (patients indicate that items cover important aspects of their experiences) and face validity (patients indicate that items measure sexual function and satisfaction), the measure shows evidence for discriminant validity (domains discriminate between groups expected to be different) and convergent validity (strong correlations between scores on PROMIS and scores on conceptually similar older measures of sexual function), as well as favorable test-retest reliability among people not expected to change (interclass correlations from two administrations of the instrument, 1 month apart). CONCLUSIONS: The PROMIS SexFS offers researchers a reliable and valid set of tools to measure self-reported sexual function and satisfaction among diverse men and women. The measures are customizable; researchers can select the relevant domains and items comprising those domains for their study.

Authors
Flynn, KE; Lin, L; Cyranowski, JM; Reeve, BB; Reese, JB; Jeffery, DD; Smith, AW; Porter, LS; Dombeck, CB; Bruner, DW; Keefe, FJ; Weinfurt, KP
MLA Citation
Flynn, KE, Lin, L, Cyranowski, JM, Reeve, BB, Reese, JB, Jeffery, DD, Smith, AW, Porter, LS, Dombeck, CB, Bruner, DW, Keefe, FJ, and Weinfurt, KP. "Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer." The journal of sexual medicine 10 Suppl 1 (February 2013): 43-52.
PMID
23387911
Source
pubmed
Published In
The Journal of Sexual Medicine
Volume
10 Suppl 1
Publish Date
2013
Start Page
43
End Page
52
DOI
10.1111/j.1743-6109.2012.02995.x

Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer.

We describe the development and validation of the Patient-Reported Outcomes Measurement Information System(®) Sexual Function and Satisfaction (PROMIS(®) SexFS; National Institutes of Health) measures, version 1.0, for cancer populations.To develop a customizable self-report measure of sexual function and satisfaction as part of the U.S. National Institutes of Health PROMIS Network.Our multidisciplinary working group followed a comprehensive protocol for developing psychometrically robust patient-reported outcome measures including qualitative (scale development) and quantitative (psychometric evaluation) development. We performed an extensive literature review, conducted 16 focus groups with cancer patients and multiple discussions with clinicians, and evaluated candidate items in cognitive testing with patients. We administered items to 819 cancer patients. Items were calibrated using item-response theory and evaluated for reliability and validity.The PROMIS SexFS measures, version 1.0, include 81 items in 11 domains: Interest in Sexual Activity, Lubrication, Vaginal Discomfort, Erectile Function, Global Satisfaction with Sex Life, Orgasm, Anal Discomfort, Therapeutic Aids, Sexual Activities, Interfering Factors, and Screener Questions.In addition to content validity (patients indicate that items cover important aspects of their experiences) and face validity (patients indicate that items measure sexual function and satisfaction), the measure shows evidence for discriminant validity (domains discriminate between groups expected to be different) and convergent validity (strong correlations between scores on PROMIS and scores on conceptually similar older measures of sexual function), as well as favorable test-retest reliability among people not expected to change (interclass correlations from two administrations of the instrument, 1 month apart).The PROMIS SexFS offers researchers a reliable and valid set of tools to measure self-reported sexual function and satisfaction among diverse men and women. The measures are customizable; researchers can select the relevant domains and items comprising those domains for their study.

Authors
Flynn, KE; Lin, L; Cyranowski, JM; Reeve, BB; Reese, JB; Jeffery, DD; Smith, AW; Porter, LS; Dombeck, CB; Bruner, DW; Keefe, FJ; Weinfurt, KP
MLA Citation
Flynn, KE, Lin, L, Cyranowski, JM, Reeve, BB, Reese, JB, Jeffery, DD, Smith, AW, Porter, LS, Dombeck, CB, Bruner, DW, Keefe, FJ, and Weinfurt, KP. "Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer." J Sex Med 10 Suppl 1 (February 2013): 43-52.
PMID
23387911
Source
epmc
Published In
The Journal of Sexual Medicine
Volume
10 Suppl 1
Publish Date
2013
Start Page
43
End Page
52
DOI
10.1111/j.1743-6109.2012.02995.x

Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer.

We describe the development and validation of the Patient-Reported Outcomes Measurement Information System(®) Sexual Function and Satisfaction (PROMIS(®) SexFS; National Institutes of Health) measures, version 1.0, for cancer populations.To develop a customizable self-report measure of sexual function and satisfaction as part of the U.S. National Institutes of Health PROMIS Network.Our multidisciplinary working group followed a comprehensive protocol for developing psychometrically robust patient-reported outcome measures including qualitative (scale development) and quantitative (psychometric evaluation) development. We performed an extensive literature review, conducted 16 focus groups with cancer patients and multiple discussions with clinicians, and evaluated candidate items in cognitive testing with patients. We administered items to 819 cancer patients. Items were calibrated using item-response theory and evaluated for reliability and validity.The PROMIS SexFS measures, version 1.0, include 81 items in 11 domains: Interest in Sexual Activity, Lubrication, Vaginal Discomfort, Erectile Function, Global Satisfaction with Sex Life, Orgasm, Anal Discomfort, Therapeutic Aids, Sexual Activities, Interfering Factors, and Screener Questions.In addition to content validity (patients indicate that items cover important aspects of their experiences) and face validity (patients indicate that items measure sexual function and satisfaction), the measure shows evidence for discriminant validity (domains discriminate between groups expected to be different) and convergent validity (strong correlations between scores on PROMIS and scores on conceptually similar older measures of sexual function), as well as favorable test-retest reliability among people not expected to change (interclass correlations from two administrations of the instrument, 1 month apart).The PROMIS SexFS offers researchers a reliable and valid set of tools to measure self-reported sexual function and satisfaction among diverse men and women. The measures are customizable; researchers can select the relevant domains and items comprising those domains for their study.

Authors
Flynn, KE; Lin, L; Cyranowski, JM; Reeve, BB; Reese, JB; Jeffery, DD; Smith, AW; Porter, LS; Dombeck, CB; Bruner, DW; Keefe, FJ; Weinfurt, KP
MLA Citation
Flynn, KE, Lin, L, Cyranowski, JM, Reeve, BB, Reese, JB, Jeffery, DD, Smith, AW, Porter, LS, Dombeck, CB, Bruner, DW, Keefe, FJ, and Weinfurt, KP. "Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer." J Sex Med 10 Suppl 1 (February 2013): 43-52.
PMID
23387911
Source
epmc
Published In
The Journal of Sexual Medicine
Volume
10 Suppl 1
Publish Date
2013
Start Page
43
End Page
52
DOI
10.1111/j.1743-6109.2012.02995.x

Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer.

We describe the development and validation of the Patient-Reported Outcomes Measurement Information System(®) Sexual Function and Satisfaction (PROMIS(®) SexFS; National Institutes of Health) measures, version 1.0, for cancer populations.To develop a customizable self-report measure of sexual function and satisfaction as part of the U.S. National Institutes of Health PROMIS Network.Our multidisciplinary working group followed a comprehensive protocol for developing psychometrically robust patient-reported outcome measures including qualitative (scale development) and quantitative (psychometric evaluation) development. We performed an extensive literature review, conducted 16 focus groups with cancer patients and multiple discussions with clinicians, and evaluated candidate items in cognitive testing with patients. We administered items to 819 cancer patients. Items were calibrated using item-response theory and evaluated for reliability and validity.The PROMIS SexFS measures, version 1.0, include 81 items in 11 domains: Interest in Sexual Activity, Lubrication, Vaginal Discomfort, Erectile Function, Global Satisfaction with Sex Life, Orgasm, Anal Discomfort, Therapeutic Aids, Sexual Activities, Interfering Factors, and Screener Questions.In addition to content validity (patients indicate that items cover important aspects of their experiences) and face validity (patients indicate that items measure sexual function and satisfaction), the measure shows evidence for discriminant validity (domains discriminate between groups expected to be different) and convergent validity (strong correlations between scores on PROMIS and scores on conceptually similar older measures of sexual function), as well as favorable test-retest reliability among people not expected to change (interclass correlations from two administrations of the instrument, 1 month apart).The PROMIS SexFS offers researchers a reliable and valid set of tools to measure self-reported sexual function and satisfaction among diverse men and women. The measures are customizable; researchers can select the relevant domains and items comprising those domains for their study.

Authors
Flynn, KE; Lin, L; Cyranowski, JM; Reeve, BB; Reese, JB; Jeffery, DD; Smith, AW; Porter, LS; Dombeck, CB; Bruner, DW; Keefe, FJ; Weinfurt, KP
MLA Citation
Flynn, KE, Lin, L, Cyranowski, JM, Reeve, BB, Reese, JB, Jeffery, DD, Smith, AW, Porter, LS, Dombeck, CB, Bruner, DW, Keefe, FJ, and Weinfurt, KP. "Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer." J Sex Med 10 Suppl 1 (February 2013): 43-52.
PMID
23387911
Source
epmc
Published In
The Journal of Sexual Medicine
Volume
10 Suppl 1
Publish Date
2013
Start Page
43
End Page
52
DOI
10.1111/j.1743-6109.2012.02995.x

Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer.

We describe the development and validation of the Patient-Reported Outcomes Measurement Information System(®) Sexual Function and Satisfaction (PROMIS(®) SexFS; National Institutes of Health) measures, version 1.0, for cancer populations.To develop a customizable self-report measure of sexual function and satisfaction as part of the U.S. National Institutes of Health PROMIS Network.Our multidisciplinary working group followed a comprehensive protocol for developing psychometrically robust patient-reported outcome measures including qualitative (scale development) and quantitative (psychometric evaluation) development. We performed an extensive literature review, conducted 16 focus groups with cancer patients and multiple discussions with clinicians, and evaluated candidate items in cognitive testing with patients. We administered items to 819 cancer patients. Items were calibrated using item-response theory and evaluated for reliability and validity.The PROMIS SexFS measures, version 1.0, include 81 items in 11 domains: Interest in Sexual Activity, Lubrication, Vaginal Discomfort, Erectile Function, Global Satisfaction with Sex Life, Orgasm, Anal Discomfort, Therapeutic Aids, Sexual Activities, Interfering Factors, and Screener Questions.In addition to content validity (patients indicate that items cover important aspects of their experiences) and face validity (patients indicate that items measure sexual function and satisfaction), the measure shows evidence for discriminant validity (domains discriminate between groups expected to be different) and convergent validity (strong correlations between scores on PROMIS and scores on conceptually similar older measures of sexual function), as well as favorable test-retest reliability among people not expected to change (interclass correlations from two administrations of the instrument, 1 month apart).The PROMIS SexFS offers researchers a reliable and valid set of tools to measure self-reported sexual function and satisfaction among diverse men and women. The measures are customizable; researchers can select the relevant domains and items comprising those domains for their study.

Authors
Flynn, KE; Lin, L; Cyranowski, JM; Reeve, BB; Reese, JB; Jeffery, DD; Smith, AW; Porter, LS; Dombeck, CB; Bruner, DW; Keefe, FJ; Weinfurt, KP
MLA Citation
Flynn, KE, Lin, L, Cyranowski, JM, Reeve, BB, Reese, JB, Jeffery, DD, Smith, AW, Porter, LS, Dombeck, CB, Bruner, DW, Keefe, FJ, and Weinfurt, KP. "Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer." J Sex Med 10 Suppl 1 (February 2013): 43-52.
PMID
23387911
Source
epmc
Published In
The Journal of Sexual Medicine
Volume
10 Suppl 1
Publish Date
2013
Start Page
43
End Page
52
DOI
10.1111/j.1743-6109.2012.02995.x

Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer.

We describe the development and validation of the Patient-Reported Outcomes Measurement Information System(®) Sexual Function and Satisfaction (PROMIS(®) SexFS; National Institutes of Health) measures, version 1.0, for cancer populations.To develop a customizable self-report measure of sexual function and satisfaction as part of the U.S. National Institutes of Health PROMIS Network.Our multidisciplinary working group followed a comprehensive protocol for developing psychometrically robust patient-reported outcome measures including qualitative (scale development) and quantitative (psychometric evaluation) development. We performed an extensive literature review, conducted 16 focus groups with cancer patients and multiple discussions with clinicians, and evaluated candidate items in cognitive testing with patients. We administered items to 819 cancer patients. Items were calibrated using item-response theory and evaluated for reliability and validity.The PROMIS SexFS measures, version 1.0, include 81 items in 11 domains: Interest in Sexual Activity, Lubrication, Vaginal Discomfort, Erectile Function, Global Satisfaction with Sex Life, Orgasm, Anal Discomfort, Therapeutic Aids, Sexual Activities, Interfering Factors, and Screener Questions.In addition to content validity (patients indicate that items cover important aspects of their experiences) and face validity (patients indicate that items measure sexual function and satisfaction), the measure shows evidence for discriminant validity (domains discriminate between groups expected to be different) and convergent validity (strong correlations between scores on PROMIS and scores on conceptually similar older measures of sexual function), as well as favorable test-retest reliability among people not expected to change (interclass correlations from two administrations of the instrument, 1 month apart).The PROMIS SexFS offers researchers a reliable and valid set of tools to measure self-reported sexual function and satisfaction among diverse men and women. The measures are customizable; researchers can select the relevant domains and items comprising those domains for their study.

Authors
Flynn, KE; Lin, L; Cyranowski, JM; Reeve, BB; Reese, JB; Jeffery, DD; Smith, AW; Porter, LS; Dombeck, CB; Bruner, DW; Keefe, FJ; Weinfurt, KP
MLA Citation
Flynn, KE, Lin, L, Cyranowski, JM, Reeve, BB, Reese, JB, Jeffery, DD, Smith, AW, Porter, LS, Dombeck, CB, Bruner, DW, Keefe, FJ, and Weinfurt, KP. "Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer." The journal of sexual medicine 10 Suppl 1 (February 2013): 43-52.
PMID
23387911
Source
epmc
Published In
The Journal of Sexual Medicine
Volume
10 Suppl 1
Publish Date
2013
Start Page
43
End Page
52
DOI
10.1111/j.1743-6109.2012.02995.x

Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer.

We describe the development and validation of the Patient-Reported Outcomes Measurement Information System(®) Sexual Function and Satisfaction (PROMIS(®) SexFS; National Institutes of Health) measures, version 1.0, for cancer populations.To develop a customizable self-report measure of sexual function and satisfaction as part of the U.S. National Institutes of Health PROMIS Network.Our multidisciplinary working group followed a comprehensive protocol for developing psychometrically robust patient-reported outcome measures including qualitative (scale development) and quantitative (psychometric evaluation) development. We performed an extensive literature review, conducted 16 focus groups with cancer patients and multiple discussions with clinicians, and evaluated candidate items in cognitive testing with patients. We administered items to 819 cancer patients. Items were calibrated using item-response theory and evaluated for reliability and validity.The PROMIS SexFS measures, version 1.0, include 81 items in 11 domains: Interest in Sexual Activity, Lubrication, Vaginal Discomfort, Erectile Function, Global Satisfaction with Sex Life, Orgasm, Anal Discomfort, Therapeutic Aids, Sexual Activities, Interfering Factors, and Screener Questions.In addition to content validity (patients indicate that items cover important aspects of their experiences) and face validity (patients indicate that items measure sexual function and satisfaction), the measure shows evidence for discriminant validity (domains discriminate between groups expected to be different) and convergent validity (strong correlations between scores on PROMIS and scores on conceptually similar older measures of sexual function), as well as favorable test-retest reliability among people not expected to change (interclass correlations from two administrations of the instrument, 1 month apart).The PROMIS SexFS offers researchers a reliable and valid set of tools to measure self-reported sexual function and satisfaction among diverse men and women. The measures are customizable; researchers can select the relevant domains and items comprising those domains for their study.

Authors
Flynn, KE; Lin, L; Cyranowski, JM; Reeve, BB; Reese, JB; Jeffery, DD; Smith, AW; Porter, LS; Dombeck, CB; Bruner, DW; Keefe, FJ; Weinfurt, KP
MLA Citation
Flynn, KE, Lin, L, Cyranowski, JM, Reeve, BB, Reese, JB, Jeffery, DD, Smith, AW, Porter, LS, Dombeck, CB, Bruner, DW, Keefe, FJ, and Weinfurt, KP. "Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer." The journal of sexual medicine 10 Suppl 1 (February 2013): 43-52.
PMID
23387911
Source
epmc
Published In
The Journal of Sexual Medicine
Volume
10 Suppl 1
Publish Date
2013
Start Page
43
End Page
52
DOI
10.1111/j.1743-6109.2012.02995.x

Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer.

We describe the development and validation of the Patient-Reported Outcomes Measurement Information System(®) Sexual Function and Satisfaction (PROMIS(®) SexFS; National Institutes of Health) measures, version 1.0, for cancer populations.To develop a customizable self-report measure of sexual function and satisfaction as part of the U.S. National Institutes of Health PROMIS Network.Our multidisciplinary working group followed a comprehensive protocol for developing psychometrically robust patient-reported outcome measures including qualitative (scale development) and quantitative (psychometric evaluation) development. We performed an extensive literature review, conducted 16 focus groups with cancer patients and multiple discussions with clinicians, and evaluated candidate items in cognitive testing with patients. We administered items to 819 cancer patients. Items were calibrated using item-response theory and evaluated for reliability and validity.The PROMIS SexFS measures, version 1.0, include 81 items in 11 domains: Interest in Sexual Activity, Lubrication, Vaginal Discomfort, Erectile Function, Global Satisfaction with Sex Life, Orgasm, Anal Discomfort, Therapeutic Aids, Sexual Activities, Interfering Factors, and Screener Questions.In addition to content validity (patients indicate that items cover important aspects of their experiences) and face validity (patients indicate that items measure sexual function and satisfaction), the measure shows evidence for discriminant validity (domains discriminate between groups expected to be different) and convergent validity (strong correlations between scores on PROMIS and scores on conceptually similar older measures of sexual function), as well as favorable test-retest reliability among people not expected to change (interclass correlations from two administrations of the instrument, 1 month apart).The PROMIS SexFS offers researchers a reliable and valid set of tools to measure self-reported sexual function and satisfaction among diverse men and women. The measures are customizable; researchers can select the relevant domains and items comprising those domains for their study.

Authors
Flynn, KE; Lin, L; Cyranowski, JM; Reeve, BB; Reese, JB; Jeffery, DD; Smith, AW; Porter, LS; Dombeck, CB; Bruner, DW; Keefe, FJ; Weinfurt, KP
MLA Citation
Flynn, KE, Lin, L, Cyranowski, JM, Reeve, BB, Reese, JB, Jeffery, DD, Smith, AW, Porter, LS, Dombeck, CB, Bruner, DW, Keefe, FJ, and Weinfurt, KP. "Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer." The journal of sexual medicine 10 Suppl 1 (February 2013): 43-52.
PMID
23387911
Source
epmc
Published In
The Journal of Sexual Medicine
Volume
10 Suppl 1
Publish Date
2013
Start Page
43
End Page
52
DOI
10.1111/j.1743-6109.2012.02995.x

Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer.

We describe the development and validation of the Patient-Reported Outcomes Measurement Information System(®) Sexual Function and Satisfaction (PROMIS(®) SexFS; National Institutes of Health) measures, version 1.0, for cancer populations.To develop a customizable self-report measure of sexual function and satisfaction as part of the U.S. National Institutes of Health PROMIS Network.Our multidisciplinary working group followed a comprehensive protocol for developing psychometrically robust patient-reported outcome measures including qualitative (scale development) and quantitative (psychometric evaluation) development. We performed an extensive literature review, conducted 16 focus groups with cancer patients and multiple discussions with clinicians, and evaluated candidate items in cognitive testing with patients. We administered items to 819 cancer patients. Items were calibrated using item-response theory and evaluated for reliability and validity.The PROMIS SexFS measures, version 1.0, include 81 items in 11 domains: Interest in Sexual Activity, Lubrication, Vaginal Discomfort, Erectile Function, Global Satisfaction with Sex Life, Orgasm, Anal Discomfort, Therapeutic Aids, Sexual Activities, Interfering Factors, and Screener Questions.In addition to content validity (patients indicate that items cover important aspects of their experiences) and face validity (patients indicate that items measure sexual function and satisfaction), the measure shows evidence for discriminant validity (domains discriminate between groups expected to be different) and convergent validity (strong correlations between scores on PROMIS and scores on conceptually similar older measures of sexual function), as well as favorable test-retest reliability among people not expected to change (interclass correlations from two administrations of the instrument, 1 month apart).The PROMIS SexFS offers researchers a reliable and valid set of tools to measure self-reported sexual function and satisfaction among diverse men and women. The measures are customizable; researchers can select the relevant domains and items comprising those domains for their study.

Authors
Flynn, KE; Lin, L; Cyranowski, JM; Reeve, BB; Reese, JB; Jeffery, DD; Smith, AW; Porter, LS; Dombeck, CB; Bruner, DW; Keefe, FJ; Weinfurt, KP
MLA Citation
Flynn, KE, Lin, L, Cyranowski, JM, Reeve, BB, Reese, JB, Jeffery, DD, Smith, AW, Porter, LS, Dombeck, CB, Bruner, DW, Keefe, FJ, and Weinfurt, KP. "Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer." The journal of sexual medicine 10 Suppl 1 (February 2013): 43-52.
PMID
23387911
Source
epmc
Published In
The Journal of Sexual Medicine
Volume
10 Suppl 1
Publish Date
2013
Start Page
43
End Page
52
DOI
10.1111/j.1743-6109.2012.02995.x

Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer.

We describe the development and validation of the Patient-Reported Outcomes Measurement Information System(®) Sexual Function and Satisfaction (PROMIS(®) SexFS; National Institutes of Health) measures, version 1.0, for cancer populations.To develop a customizable self-report measure of sexual function and satisfaction as part of the U.S. National Institutes of Health PROMIS Network.Our multidisciplinary working group followed a comprehensive protocol for developing psychometrically robust patient-reported outcome measures including qualitative (scale development) and quantitative (psychometric evaluation) development. We performed an extensive literature review, conducted 16 focus groups with cancer patients and multiple discussions with clinicians, and evaluated candidate items in cognitive testing with patients. We administered items to 819 cancer patients. Items were calibrated using item-response theory and evaluated for reliability and validity.The PROMIS SexFS measures, version 1.0, include 81 items in 11 domains: Interest in Sexual Activity, Lubrication, Vaginal Discomfort, Erectile Function, Global Satisfaction with Sex Life, Orgasm, Anal Discomfort, Therapeutic Aids, Sexual Activities, Interfering Factors, and Screener Questions.In addition to content validity (patients indicate that items cover important aspects of their experiences) and face validity (patients indicate that items measure sexual function and satisfaction), the measure shows evidence for discriminant validity (domains discriminate between groups expected to be different) and convergent validity (strong correlations between scores on PROMIS and scores on conceptually similar older measures of sexual function), as well as favorable test-retest reliability among people not expected to change (interclass correlations from two administrations of the instrument, 1 month apart).The PROMIS SexFS offers researchers a reliable and valid set of tools to measure self-reported sexual function and satisfaction among diverse men and women. The measures are customizable; researchers can select the relevant domains and items comprising those domains for their study.

Authors
Flynn, KE; Lin, L; Cyranowski, JM; Reeve, BB; Reese, JB; Jeffery, DD; Smith, AW; Porter, LS; Dombeck, CB; Bruner, DW; Keefe, FJ; Weinfurt, KP
MLA Citation
Flynn, KE, Lin, L, Cyranowski, JM, Reeve, BB, Reese, JB, Jeffery, DD, Smith, AW, Porter, LS, Dombeck, CB, Bruner, DW, Keefe, FJ, and Weinfurt, KP. "Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer." J Sex Med 10 Suppl 1 (February 2013): 43-52.
PMID
23387911
Source
epmc
Published In
The Journal of Sexual Medicine
Volume
10 Suppl 1
Publish Date
2013
Start Page
43
End Page
52
DOI
10.1111/j.1743-6109.2012.02995.x

Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer.

We describe the development and validation of the Patient-Reported Outcomes Measurement Information System(®) Sexual Function and Satisfaction (PROMIS(®) SexFS; National Institutes of Health) measures, version 1.0, for cancer populations.To develop a customizable self-report measure of sexual function and satisfaction as part of the U.S. National Institutes of Health PROMIS Network.Our multidisciplinary working group followed a comprehensive protocol for developing psychometrically robust patient-reported outcome measures including qualitative (scale development) and quantitative (psychometric evaluation) development. We performed an extensive literature review, conducted 16 focus groups with cancer patients and multiple discussions with clinicians, and evaluated candidate items in cognitive testing with patients. We administered items to 819 cancer patients. Items were calibrated using item-response theory and evaluated for reliability and validity.The PROMIS SexFS measures, version 1.0, include 81 items in 11 domains: Interest in Sexual Activity, Lubrication, Vaginal Discomfort, Erectile Function, Global Satisfaction with Sex Life, Orgasm, Anal Discomfort, Therapeutic Aids, Sexual Activities, Interfering Factors, and Screener Questions.In addition to content validity (patients indicate that items cover important aspects of their experiences) and face validity (patients indicate that items measure sexual function and satisfaction), the measure shows evidence for discriminant validity (domains discriminate between groups expected to be different) and convergent validity (strong correlations between scores on PROMIS and scores on conceptually similar older measures of sexual function), as well as favorable test-retest reliability among people not expected to change (interclass correlations from two administrations of the instrument, 1 month apart).The PROMIS SexFS offers researchers a reliable and valid set of tools to measure self-reported sexual function and satisfaction among diverse men and women. The measures are customizable; researchers can select the relevant domains and items comprising those domains for their study.

Authors
Flynn, KE; Lin, L; Cyranowski, JM; Reeve, BB; Reese, JB; Jeffery, DD; Smith, AW; Porter, LS; Dombeck, CB; Bruner, DW; Keefe, FJ; Weinfurt, KP
MLA Citation
Flynn, KE, Lin, L, Cyranowski, JM, Reeve, BB, Reese, JB, Jeffery, DD, Smith, AW, Porter, LS, Dombeck, CB, Bruner, DW, Keefe, FJ, and Weinfurt, KP. "Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer." J Sex Med 10 Suppl 1 (February 2013): 43-52.
PMID
23387911
Source
epmc
Published In
The Journal of Sexual Medicine
Volume
10 Suppl 1
Publish Date
2013
Start Page
43
End Page
52
DOI
10.1111/j.1743-6109.2012.02995.x

Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer.

We describe the development and validation of the Patient-Reported Outcomes Measurement Information System(®) Sexual Function and Satisfaction (PROMIS(®) SexFS; National Institutes of Health) measures, version 1.0, for cancer populations.To develop a customizable self-report measure of sexual function and satisfaction as part of the U.S. National Institutes of Health PROMIS Network.Our multidisciplinary working group followed a comprehensive protocol for developing psychometrically robust patient-reported outcome measures including qualitative (scale development) and quantitative (psychometric evaluation) development. We performed an extensive literature review, conducted 16 focus groups with cancer patients and multiple discussions with clinicians, and evaluated candidate items in cognitive testing with patients. We administered items to 819 cancer patients. Items were calibrated using item-response theory and evaluated for reliability and validity.The PROMIS SexFS measures, version 1.0, include 81 items in 11 domains: Interest in Sexual Activity, Lubrication, Vaginal Discomfort, Erectile Function, Global Satisfaction with Sex Life, Orgasm, Anal Discomfort, Therapeutic Aids, Sexual Activities, Interfering Factors, and Screener Questions.In addition to content validity (patients indicate that items cover important aspects of their experiences) and face validity (patients indicate that items measure sexual function and satisfaction), the measure shows evidence for discriminant validity (domains discriminate between groups expected to be different) and convergent validity (strong correlations between scores on PROMIS and scores on conceptually similar older measures of sexual function), as well as favorable test-retest reliability among people not expected to change (interclass correlations from two administrations of the instrument, 1 month apart).The PROMIS SexFS offers researchers a reliable and valid set of tools to measure self-reported sexual function and satisfaction among diverse men and women. The measures are customizable; researchers can select the relevant domains and items comprising those domains for their study.

Authors
Flynn, KE; Lin, L; Cyranowski, JM; Reeve, BB; Reese, JB; Jeffery, DD; Smith, AW; Porter, LS; Dombeck, CB; Bruner, DW; Keefe, FJ; Weinfurt, KP
MLA Citation
Flynn, KE, Lin, L, Cyranowski, JM, Reeve, BB, Reese, JB, Jeffery, DD, Smith, AW, Porter, LS, Dombeck, CB, Bruner, DW, Keefe, FJ, and Weinfurt, KP. "Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer." J Sex Med 10 Suppl 1 (February 2013): 43-52.
PMID
23387911
Source
epmc
Published In
The Journal of Sexual Medicine
Volume
10 Suppl 1
Publish Date
2013
Start Page
43
End Page
52
DOI
10.1111/j.1743-6109.2012.02995.x

Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer.

We describe the development and validation of the Patient-Reported Outcomes Measurement Information System(®) Sexual Function and Satisfaction (PROMIS(®) SexFS; National Institutes of Health) measures, version 1.0, for cancer populations.To develop a customizable self-report measure of sexual function and satisfaction as part of the U.S. National Institutes of Health PROMIS Network.Our multidisciplinary working group followed a comprehensive protocol for developing psychometrically robust patient-reported outcome measures including qualitative (scale development) and quantitative (psychometric evaluation) development. We performed an extensive literature review, conducted 16 focus groups with cancer patients and multiple discussions with clinicians, and evaluated candidate items in cognitive testing with patients. We administered items to 819 cancer patients. Items were calibrated using item-response theory and evaluated for reliability and validity.The PROMIS SexFS measures, version 1.0, include 81 items in 11 domains: Interest in Sexual Activity, Lubrication, Vaginal Discomfort, Erectile Function, Global Satisfaction with Sex Life, Orgasm, Anal Discomfort, Therapeutic Aids, Sexual Activities, Interfering Factors, and Screener Questions.In addition to content validity (patients indicate that items cover important aspects of their experiences) and face validity (patients indicate that items measure sexual function and satisfaction), the measure shows evidence for discriminant validity (domains discriminate between groups expected to be different) and convergent validity (strong correlations between scores on PROMIS and scores on conceptually similar older measures of sexual function), as well as favorable test-retest reliability among people not expected to change (interclass correlations from two administrations of the instrument, 1 month apart).The PROMIS SexFS offers researchers a reliable and valid set of tools to measure self-reported sexual function and satisfaction among diverse men and women. The measures are customizable; researchers can select the relevant domains and items comprising those domains for their study.

Authors
Flynn, KE; Lin, L; Cyranowski, JM; Reeve, BB; Reese, JB; Jeffery, DD; Smith, AW; Porter, LS; Dombeck, CB; Bruner, DW; Keefe, FJ; Weinfurt, KP
MLA Citation
Flynn, KE, Lin, L, Cyranowski, JM, Reeve, BB, Reese, JB, Jeffery, DD, Smith, AW, Porter, LS, Dombeck, CB, Bruner, DW, Keefe, FJ, and Weinfurt, KP. "Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer." J Sex Med 10 Suppl 1 (February 2013): 43-52.
PMID
23387911
Source
epmc
Published In
The Journal of Sexual Medicine
Volume
10 Suppl 1
Publish Date
2013
Start Page
43
End Page
52
DOI
10.1111/j.1743-6109.2012.02995.x

Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer.

We describe the development and validation of the Patient-Reported Outcomes Measurement Information System(®) Sexual Function and Satisfaction (PROMIS(®) SexFS; National Institutes of Health) measures, version 1.0, for cancer populations.To develop a customizable self-report measure of sexual function and satisfaction as part of the U.S. National Institutes of Health PROMIS Network.Our multidisciplinary working group followed a comprehensive protocol for developing psychometrically robust patient-reported outcome measures including qualitative (scale development) and quantitative (psychometric evaluation) development. We performed an extensive literature review, conducted 16 focus groups with cancer patients and multiple discussions with clinicians, and evaluated candidate items in cognitive testing with patients. We administered items to 819 cancer patients. Items were calibrated using item-response theory and evaluated for reliability and validity.The PROMIS SexFS measures, version 1.0, include 81 items in 11 domains: Interest in Sexual Activity, Lubrication, Vaginal Discomfort, Erectile Function, Global Satisfaction with Sex Life, Orgasm, Anal Discomfort, Therapeutic Aids, Sexual Activities, Interfering Factors, and Screener Questions.In addition to content validity (patients indicate that items cover important aspects of their experiences) and face validity (patients indicate that items measure sexual function and satisfaction), the measure shows evidence for discriminant validity (domains discriminate between groups expected to be different) and convergent validity (strong correlations between scores on PROMIS and scores on conceptually similar older measures of sexual function), as well as favorable test-retest reliability among people not expected to change (interclass correlations from two administrations of the instrument, 1 month apart).The PROMIS SexFS offers researchers a reliable and valid set of tools to measure self-reported sexual function and satisfaction among diverse men and women. The measures are customizable; researchers can select the relevant domains and items comprising those domains for their study.

Authors
Flynn, KE; Lin, L; Cyranowski, JM; Reeve, BB; Reese, JB; Jeffery, DD; Smith, AW; Porter, LS; Dombeck, CB; Bruner, DW; Keefe, FJ; Weinfurt, KP
MLA Citation
Flynn, KE, Lin, L, Cyranowski, JM, Reeve, BB, Reese, JB, Jeffery, DD, Smith, AW, Porter, LS, Dombeck, CB, Bruner, DW, Keefe, FJ, and Weinfurt, KP. "Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer." The journal of sexual medicine 10 Suppl 1 (February 2013): 43-52.
PMID
23387911
Source
epmc
Published In
The Journal of Sexual Medicine
Volume
10 Suppl 1
Publish Date
2013
Start Page
43
End Page
52
DOI
10.1111/j.1743-6109.2012.02995.x

Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer.

We describe the development and validation of the Patient-Reported Outcomes Measurement Information System(®) Sexual Function and Satisfaction (PROMIS(®) SexFS; National Institutes of Health) measures, version 1.0, for cancer populations.To develop a customizable self-report measure of sexual function and satisfaction as part of the U.S. National Institutes of Health PROMIS Network.Our multidisciplinary working group followed a comprehensive protocol for developing psychometrically robust patient-reported outcome measures including qualitative (scale development) and quantitative (psychometric evaluation) development. We performed an extensive literature review, conducted 16 focus groups with cancer patients and multiple discussions with clinicians, and evaluated candidate items in cognitive testing with patients. We administered items to 819 cancer patients. Items were calibrated using item-response theory and evaluated for reliability and validity.The PROMIS SexFS measures, version 1.0, include 81 items in 11 domains: Interest in Sexual Activity, Lubrication, Vaginal Discomfort, Erectile Function, Global Satisfaction with Sex Life, Orgasm, Anal Discomfort, Therapeutic Aids, Sexual Activities, Interfering Factors, and Screener Questions.In addition to content validity (patients indicate that items cover important aspects of their experiences) and face validity (patients indicate that items measure sexual function and satisfaction), the measure shows evidence for discriminant validity (domains discriminate between groups expected to be different) and convergent validity (strong correlations between scores on PROMIS and scores on conceptually similar older measures of sexual function), as well as favorable test-retest reliability among people not expected to change (interclass correlations from two administrations of the instrument, 1 month apart).The PROMIS SexFS offers researchers a reliable and valid set of tools to measure self-reported sexual function and satisfaction among diverse men and women. The measures are customizable; researchers can select the relevant domains and items comprising those domains for their study.

Authors
Flynn, KE; Lin, L; Cyranowski, JM; Reeve, BB; Reese, JB; Jeffery, DD; Smith, AW; Porter, LS; Dombeck, CB; Bruner, DW; Keefe, FJ; Weinfurt, KP
MLA Citation
Flynn, KE, Lin, L, Cyranowski, JM, Reeve, BB, Reese, JB, Jeffery, DD, Smith, AW, Porter, LS, Dombeck, CB, Bruner, DW, Keefe, FJ, and Weinfurt, KP. "Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer." The journal of sexual medicine 10 Suppl 1 (February 2013): 43-52.
PMID
23387911
Source
epmc
Published In
The Journal of Sexual Medicine
Volume
10 Suppl 1
Publish Date
2013
Start Page
43
End Page
52
DOI
10.1111/j.1743-6109.2012.02995.x

Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer.

We describe the development and validation of the Patient-Reported Outcomes Measurement Information System(®) Sexual Function and Satisfaction (PROMIS(®) SexFS; National Institutes of Health) measures, version 1.0, for cancer populations.To develop a customizable self-report measure of sexual function and satisfaction as part of the U.S. National Institutes of Health PROMIS Network.Our multidisciplinary working group followed a comprehensive protocol for developing psychometrically robust patient-reported outcome measures including qualitative (scale development) and quantitative (psychometric evaluation) development. We performed an extensive literature review, conducted 16 focus groups with cancer patients and multiple discussions with clinicians, and evaluated candidate items in cognitive testing with patients. We administered items to 819 cancer patients. Items were calibrated using item-response theory and evaluated for reliability and validity.The PROMIS SexFS measures, version 1.0, include 81 items in 11 domains: Interest in Sexual Activity, Lubrication, Vaginal Discomfort, Erectile Function, Global Satisfaction with Sex Life, Orgasm, Anal Discomfort, Therapeutic Aids, Sexual Activities, Interfering Factors, and Screener Questions.In addition to content validity (patients indicate that items cover important aspects of their experiences) and face validity (patients indicate that items measure sexual function and satisfaction), the measure shows evidence for discriminant validity (domains discriminate between groups expected to be different) and convergent validity (strong correlations between scores on PROMIS and scores on conceptually similar older measures of sexual function), as well as favorable test-retest reliability among people not expected to change (interclass correlations from two administrations of the instrument, 1 month apart).The PROMIS SexFS offers researchers a reliable and valid set of tools to measure self-reported sexual function and satisfaction among diverse men and women. The measures are customizable; researchers can select the relevant domains and items comprising those domains for their study.

Authors
Flynn, KE; Lin, L; Cyranowski, JM; Reeve, BB; Reese, JB; Jeffery, DD; Smith, AW; Porter, LS; Dombeck, CB; Bruner, DW; Keefe, FJ; Weinfurt, KP
MLA Citation
Flynn, KE, Lin, L, Cyranowski, JM, Reeve, BB, Reese, JB, Jeffery, DD, Smith, AW, Porter, LS, Dombeck, CB, Bruner, DW, Keefe, FJ, and Weinfurt, KP. "Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer." The journal of sexual medicine 10 Suppl 1 (February 2013): 43-52.
PMID
23387911
Source
epmc
Published In
The Journal of Sexual Medicine
Volume
10 Suppl 1
Publish Date
2013
Start Page
43
End Page
52
DOI
10.1111/j.1743-6109.2012.02995.x

Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer.

We describe the development and validation of the Patient-Reported Outcomes Measurement Information System(®) Sexual Function and Satisfaction (PROMIS(®) SexFS; National Institutes of Health) measures, version 1.0, for cancer populations.To develop a customizable self-report measure of sexual function and satisfaction as part of the U.S. National Institutes of Health PROMIS Network.Our multidisciplinary working group followed a comprehensive protocol for developing psychometrically robust patient-reported outcome measures including qualitative (scale development) and quantitative (psychometric evaluation) development. We performed an extensive literature review, conducted 16 focus groups with cancer patients and multiple discussions with clinicians, and evaluated candidate items in cognitive testing with patients. We administered items to 819 cancer patients. Items were calibrated using item-response theory and evaluated for reliability and validity.The PROMIS SexFS measures, version 1.0, include 81 items in 11 domains: Interest in Sexual Activity, Lubrication, Vaginal Discomfort, Erectile Function, Global Satisfaction with Sex Life, Orgasm, Anal Discomfort, Therapeutic Aids, Sexual Activities, Interfering Factors, and Screener Questions.In addition to content validity (patients indicate that items cover important aspects of their experiences) and face validity (patients indicate that items measure sexual function and satisfaction), the measure shows evidence for discriminant validity (domains discriminate between groups expected to be different) and convergent validity (strong correlations between scores on PROMIS and scores on conceptually similar older measures of sexual function), as well as favorable test-retest reliability among people not expected to change (interclass correlations from two administrations of the instrument, 1 month apart).The PROMIS SexFS offers researchers a reliable and valid set of tools to measure self-reported sexual function and satisfaction among diverse men and women. The measures are customizable; researchers can select the relevant domains and items comprising those domains for their study.

Authors
Flynn, KE; Lin, L; Cyranowski, JM; Reeve, BB; Reese, JB; Jeffery, DD; Smith, AW; Porter, LS; Dombeck, CB; Bruner, DW; Keefe, FJ; Weinfurt, KP
MLA Citation
Flynn, KE, Lin, L, Cyranowski, JM, Reeve, BB, Reese, JB, Jeffery, DD, Smith, AW, Porter, LS, Dombeck, CB, Bruner, DW, Keefe, FJ, and Weinfurt, KP. "Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer." The journal of sexual medicine 10 Suppl 1 (February 2013): 43-52.
PMID
23387911
Source
epmc
Published In
The Journal of Sexual Medicine
Volume
10 Suppl 1
Publish Date
2013
Start Page
43
End Page
52
DOI
10.1111/j.1743-6109.2012.02995.x

Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer.

We describe the development and validation of the Patient-Reported Outcomes Measurement Information System(®) Sexual Function and Satisfaction (PROMIS(®) SexFS; National Institutes of Health) measures, version 1.0, for cancer populations.To develop a customizable self-report measure of sexual function and satisfaction as part of the U.S. National Institutes of Health PROMIS Network.Our multidisciplinary working group followed a comprehensive protocol for developing psychometrically robust patient-reported outcome measures including qualitative (scale development) and quantitative (psychometric evaluation) development. We performed an extensive literature review, conducted 16 focus groups with cancer patients and multiple discussions with clinicians, and evaluated candidate items in cognitive testing with patients. We administered items to 819 cancer patients. Items were calibrated using item-response theory and evaluated for reliability and validity.The PROMIS SexFS measures, version 1.0, include 81 items in 11 domains: Interest in Sexual Activity, Lubrication, Vaginal Discomfort, Erectile Function, Global Satisfaction with Sex Life, Orgasm, Anal Discomfort, Therapeutic Aids, Sexual Activities, Interfering Factors, and Screener Questions.In addition to content validity (patients indicate that items cover important aspects of their experiences) and face validity (patients indicate that items measure sexual function and satisfaction), the measure shows evidence for discriminant validity (domains discriminate between groups expected to be different) and convergent validity (strong correlations between scores on PROMIS and scores on conceptually similar older measures of sexual function), as well as favorable test-retest reliability among people not expected to change (interclass correlations from two administrations of the instrument, 1 month apart).The PROMIS SexFS offers researchers a reliable and valid set of tools to measure self-reported sexual function and satisfaction among diverse men and women. The measures are customizable; researchers can select the relevant domains and items comprising those domains for their study.

Authors
Flynn, KE; Lin, L; Cyranowski, JM; Reeve, BB; Reese, JB; Jeffery, DD; Smith, AW; Porter, LS; Dombeck, CB; Bruner, DW; Keefe, FJ; Weinfurt, KP
MLA Citation
Flynn, KE, Lin, L, Cyranowski, JM, Reeve, BB, Reese, JB, Jeffery, DD, Smith, AW, Porter, LS, Dombeck, CB, Bruner, DW, Keefe, FJ, and Weinfurt, KP. "Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer." J Sex Med 10 Suppl 1 (February 2013): 43-52.
PMID
23387911
Source
pubmed
Published In
The Journal of Sexual Medicine
Volume
10 Suppl 1
Publish Date
2013
Start Page
43
End Page
52
DOI
10.1111/j.1743-6109.2012.02995.x

Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer.

We describe the development and validation of the Patient-Reported Outcomes Measurement Information System(®) Sexual Function and Satisfaction (PROMIS(®) SexFS; National Institutes of Health) measures, version 1.0, for cancer populations.To develop a customizable self-report measure of sexual function and satisfaction as part of the U.S. National Institutes of Health PROMIS Network.Our multidisciplinary working group followed a comprehensive protocol for developing psychometrically robust patient-reported outcome measures including qualitative (scale development) and quantitative (psychometric evaluation) development. We performed an extensive literature review, conducted 16 focus groups with cancer patients and multiple discussions with clinicians, and evaluated candidate items in cognitive testing with patients. We administered items to 819 cancer patients. Items were calibrated using item-response theory and evaluated for reliability and validity.The PROMIS SexFS measures, version 1.0, include 81 items in 11 domains: Interest in Sexual Activity, Lubrication, Vaginal Discomfort, Erectile Function, Global Satisfaction with Sex Life, Orgasm, Anal Discomfort, Therapeutic Aids, Sexual Activities, Interfering Factors, and Screener Questions.In addition to content validity (patients indicate that items cover important aspects of their experiences) and face validity (patients indicate that items measure sexual function and satisfaction), the measure shows evidence for discriminant validity (domains discriminate between groups expected to be different) and convergent validity (strong correlations between scores on PROMIS and scores on conceptually similar older measures of sexual function), as well as favorable test-retest reliability among people not expected to change (interclass correlations from two administrations of the instrument, 1 month apart).The PROMIS SexFS offers researchers a reliable and valid set of tools to measure self-reported sexual function and satisfaction among diverse men and women. The measures are customizable; researchers can select the relevant domains and items comprising those domains for their study.

Authors
Flynn, KE; Lin, L; Cyranowski, JM; Reeve, BB; Reese, JB; Jeffery, DD; Smith, AW; Porter, LS; Dombeck, CB; Bruner, DW; Keefe, FJ; Weinfurt, KP
MLA Citation
Flynn, KE, Lin, L, Cyranowski, JM, Reeve, BB, Reese, JB, Jeffery, DD, Smith, AW, Porter, LS, Dombeck, CB, Bruner, DW, Keefe, FJ, and Weinfurt, KP. "Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer." J Sex Med 10 Suppl 1 (February 2013): 43-52.
PMID
23387911
Source
pubmed
Published In
The Journal of Sexual Medicine
Volume
10 Suppl 1
Publish Date
2013
Start Page
43
End Page
52
DOI
10.1111/j.1743-6109.2012.02995.x

Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer.

We describe the development and validation of the Patient-Reported Outcomes Measurement Information System(®) Sexual Function and Satisfaction (PROMIS(®) SexFS; National Institutes of Health) measures, version 1.0, for cancer populations.To develop a customizable self-report measure of sexual function and satisfaction as part of the U.S. National Institutes of Health PROMIS Network.Our multidisciplinary working group followed a comprehensive protocol for developing psychometrically robust patient-reported outcome measures including qualitative (scale development) and quantitative (psychometric evaluation) development. We performed an extensive literature review, conducted 16 focus groups with cancer patients and multiple discussions with clinicians, and evaluated candidate items in cognitive testing with patients. We administered items to 819 cancer patients. Items were calibrated using item-response theory and evaluated for reliability and validity.The PROMIS SexFS measures, version 1.0, include 81 items in 11 domains: Interest in Sexual Activity, Lubrication, Vaginal Discomfort, Erectile Function, Global Satisfaction with Sex Life, Orgasm, Anal Discomfort, Therapeutic Aids, Sexual Activities, Interfering Factors, and Screener Questions.In addition to content validity (patients indicate that items cover important aspects of their experiences) and face validity (patients indicate that items measure sexual function and satisfaction), the measure shows evidence for discriminant validity (domains discriminate between groups expected to be different) and convergent validity (strong correlations between scores on PROMIS and scores on conceptually similar older measures of sexual function), as well as favorable test-retest reliability among people not expected to change (interclass correlations from two administrations of the instrument, 1 month apart).The PROMIS SexFS offers researchers a reliable and valid set of tools to measure self-reported sexual function and satisfaction among diverse men and women. The measures are customizable; researchers can select the relevant domains and items comprising those domains for their study.

Authors
Flynn, KE; Lin, L; Cyranowski, JM; Reeve, BB; Reese, JB; Jeffery, DD; Smith, AW; Porter, LS; Dombeck, CB; Bruner, DW; Keefe, FJ; Weinfurt, KP
MLA Citation
Flynn, KE, Lin, L, Cyranowski, JM, Reeve, BB, Reese, JB, Jeffery, DD, Smith, AW, Porter, LS, Dombeck, CB, Bruner, DW, Keefe, FJ, and Weinfurt, KP. "Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer." J Sex Med 10 Suppl 1 (February 2013): 43-52.
PMID
23387911
Source
pubmed
Published In
The Journal of Sexual Medicine
Volume
10 Suppl 1
Publish Date
2013
Start Page
43
End Page
52
DOI
10.1111/j.1743-6109.2012.02995.x

Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer.

We describe the development and validation of the Patient-Reported Outcomes Measurement Information System(®) Sexual Function and Satisfaction (PROMIS(®) SexFS; National Institutes of Health) measures, version 1.0, for cancer populations.To develop a customizable self-report measure of sexual function and satisfaction as part of the U.S. National Institutes of Health PROMIS Network.Our multidisciplinary working group followed a comprehensive protocol for developing psychometrically robust patient-reported outcome measures including qualitative (scale development) and quantitative (psychometric evaluation) development. We performed an extensive literature review, conducted 16 focus groups with cancer patients and multiple discussions with clinicians, and evaluated candidate items in cognitive testing with patients. We administered items to 819 cancer patients. Items were calibrated using item-response theory and evaluated for reliability and validity.The PROMIS SexFS measures, version 1.0, include 81 items in 11 domains: Interest in Sexual Activity, Lubrication, Vaginal Discomfort, Erectile Function, Global Satisfaction with Sex Life, Orgasm, Anal Discomfort, Therapeutic Aids, Sexual Activities, Interfering Factors, and Screener Questions.In addition to content validity (patients indicate that items cover important aspects of their experiences) and face validity (patients indicate that items measure sexual function and satisfaction), the measure shows evidence for discriminant validity (domains discriminate between groups expected to be different) and convergent validity (strong correlations between scores on PROMIS and scores on conceptually similar older measures of sexual function), as well as favorable test-retest reliability among people not expected to change (interclass correlations from two administrations of the instrument, 1 month apart).The PROMIS SexFS offers researchers a reliable and valid set of tools to measure self-reported sexual function and satisfaction among diverse men and women. The measures are customizable; researchers can select the relevant domains and items comprising those domains for their study.

Authors
Flynn, KE; Lin, L; Cyranowski, JM; Reeve, BB; Reese, JB; Jeffery, DD; Smith, AW; Porter, LS; Dombeck, CB; Bruner, DW; Keefe, FJ; Weinfurt, KP
MLA Citation
Flynn, KE, Lin, L, Cyranowski, JM, Reeve, BB, Reese, JB, Jeffery, DD, Smith, AW, Porter, LS, Dombeck, CB, Bruner, DW, Keefe, FJ, and Weinfurt, KP. "Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer." J Sex Med 10 Suppl 1 (February 2013): 43-52.
PMID
23387911
Source
pubmed
Published In
The Journal of Sexual Medicine
Volume
10 Suppl 1
Publish Date
2013
Start Page
43
End Page
52
DOI
10.1111/j.1743-6109.2012.02995.x

Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer.

We describe the development and validation of the Patient-Reported Outcomes Measurement Information System(®) Sexual Function and Satisfaction (PROMIS(®) SexFS; National Institutes of Health) measures, version 1.0, for cancer populations.To develop a customizable self-report measure of sexual function and satisfaction as part of the U.S. National Institutes of Health PROMIS Network.Our multidisciplinary working group followed a comprehensive protocol for developing psychometrically robust patient-reported outcome measures including qualitative (scale development) and quantitative (psychometric evaluation) development. We performed an extensive literature review, conducted 16 focus groups with cancer patients and multiple discussions with clinicians, and evaluated candidate items in cognitive testing with patients. We administered items to 819 cancer patients. Items were calibrated using item-response theory and evaluated for reliability and validity.The PROMIS SexFS measures, version 1.0, include 81 items in 11 domains: Interest in Sexual Activity, Lubrication, Vaginal Discomfort, Erectile Function, Global Satisfaction with Sex Life, Orgasm, Anal Discomfort, Therapeutic Aids, Sexual Activities, Interfering Factors, and Screener Questions.In addition to content validity (patients indicate that items cover important aspects of their experiences) and face validity (patients indicate that items measure sexual function and satisfaction), the measure shows evidence for discriminant validity (domains discriminate between groups expected to be different) and convergent validity (strong correlations between scores on PROMIS and scores on conceptually similar older measures of sexual function), as well as favorable test-retest reliability among people not expected to change (interclass correlations from two administrations of the instrument, 1 month apart).The PROMIS SexFS offers researchers a reliable and valid set of tools to measure self-reported sexual function and satisfaction among diverse men and women. The measures are customizable; researchers can select the relevant domains and items comprising those domains for their study.

Authors
Flynn, KE; Lin, L; Cyranowski, JM; Reeve, BB; Reese, JB; Jeffery, DD; Smith, AW; Porter, LS; Dombeck, CB; Bruner, DW; Keefe, FJ; Weinfurt, KP
MLA Citation
Flynn, KE, Lin, L, Cyranowski, JM, Reeve, BB, Reese, JB, Jeffery, DD, Smith, AW, Porter, LS, Dombeck, CB, Bruner, DW, Keefe, FJ, and Weinfurt, KP. "Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer." The journal of sexual medicine 10 Suppl 1 (February 2013): 43-52.
PMID
23387911
Source
pubmed
Published In
The Journal of Sexual Medicine
Volume
10 Suppl 1
Publish Date
2013
Start Page
43
End Page
52
DOI
10.1111/j.1743-6109.2012.02995.x

Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer.

We describe the development and validation of the Patient-Reported Outcomes Measurement Information System(®) Sexual Function and Satisfaction (PROMIS(®) SexFS; National Institutes of Health) measures, version 1.0, for cancer populations.To develop a customizable self-report measure of sexual function and satisfaction as part of the U.S. National Institutes of Health PROMIS Network.Our multidisciplinary working group followed a comprehensive protocol for developing psychometrically robust patient-reported outcome measures including qualitative (scale development) and quantitative (psychometric evaluation) development. We performed an extensive literature review, conducted 16 focus groups with cancer patients and multiple discussions with clinicians, and evaluated candidate items in cognitive testing with patients. We administered items to 819 cancer patients. Items were calibrated using item-response theory and evaluated for reliability and validity.The PROMIS SexFS measures, version 1.0, include 81 items in 11 domains: Interest in Sexual Activity, Lubrication, Vaginal Discomfort, Erectile Function, Global Satisfaction with Sex Life, Orgasm, Anal Discomfort, Therapeutic Aids, Sexual Activities, Interfering Factors, and Screener Questions.In addition to content validity (patients indicate that items cover important aspects of their experiences) and face validity (patients indicate that items measure sexual function and satisfaction), the measure shows evidence for discriminant validity (domains discriminate between groups expected to be different) and convergent validity (strong correlations between scores on PROMIS and scores on conceptually similar older measures of sexual function), as well as favorable test-retest reliability among people not expected to change (interclass correlations from two administrations of the instrument, 1 month apart).The PROMIS SexFS offers researchers a reliable and valid set of tools to measure self-reported sexual function and satisfaction among diverse men and women. The measures are customizable; researchers can select the relevant domains and items comprising those domains for their study.

Authors
Flynn, KE; Lin, L; Cyranowski, JM; Reeve, BB; Reese, JB; Jeffery, DD; Smith, AW; Porter, LS; Dombeck, CB; Bruner, DW; Keefe, FJ; Weinfurt, KP
MLA Citation
Flynn, KE, Lin, L, Cyranowski, JM, Reeve, BB, Reese, JB, Jeffery, DD, Smith, AW, Porter, LS, Dombeck, CB, Bruner, DW, Keefe, FJ, and Weinfurt, KP. "Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer." The journal of sexual medicine 10 Suppl 1 (February 2013): 43-52.
PMID
23387911
Source
pubmed
Published In
The Journal of Sexual Medicine
Volume
10 Suppl 1
Publish Date
2013
Start Page
43
End Page
52
DOI
10.1111/j.1743-6109.2012.02995.x

Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer.

We describe the development and validation of the Patient-Reported Outcomes Measurement Information System(®) Sexual Function and Satisfaction (PROMIS(®) SexFS; National Institutes of Health) measures, version 1.0, for cancer populations.To develop a customizable self-report measure of sexual function and satisfaction as part of the U.S. National Institutes of Health PROMIS Network.Our multidisciplinary working group followed a comprehensive protocol for developing psychometrically robust patient-reported outcome measures including qualitative (scale development) and quantitative (psychometric evaluation) development. We performed an extensive literature review, conducted 16 focus groups with cancer patients and multiple discussions with clinicians, and evaluated candidate items in cognitive testing with patients. We administered items to 819 cancer patients. Items were calibrated using item-response theory and evaluated for reliability and validity.The PROMIS SexFS measures, version 1.0, include 81 items in 11 domains: Interest in Sexual Activity, Lubrication, Vaginal Discomfort, Erectile Function, Global Satisfaction with Sex Life, Orgasm, Anal Discomfort, Therapeutic Aids, Sexual Activities, Interfering Factors, and Screener Questions.In addition to content validity (patients indicate that items cover important aspects of their experiences) and face validity (patients indicate that items measure sexual function and satisfaction), the measure shows evidence for discriminant validity (domains discriminate between groups expected to be different) and convergent validity (strong correlations between scores on PROMIS and scores on conceptually similar older measures of sexual function), as well as favorable test-retest reliability among people not expected to change (interclass correlations from two administrations of the instrument, 1 month apart).The PROMIS SexFS offers researchers a reliable and valid set of tools to measure self-reported sexual function and satisfaction among diverse men and women. The measures are customizable; researchers can select the relevant domains and items comprising those domains for their study.

Authors
Flynn, KE; Lin, L; Cyranowski, JM; Reeve, BB; Reese, JB; Jeffery, DD; Smith, AW; Porter, LS; Dombeck, CB; Bruner, DW; Keefe, FJ; Weinfurt, KP
MLA Citation
Flynn, KE, Lin, L, Cyranowski, JM, Reeve, BB, Reese, JB, Jeffery, DD, Smith, AW, Porter, LS, Dombeck, CB, Bruner, DW, Keefe, FJ, and Weinfurt, KP. "Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer." The journal of sexual medicine 10 Suppl 1 (February 2013): 43-52.
PMID
23387911
Source
pubmed
Published In
The Journal of Sexual Medicine
Volume
10 Suppl 1
Publish Date
2013
Start Page
43
End Page
52
DOI
10.1111/j.1743-6109.2012.02995.x

Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer.

We describe the development and validation of the Patient-Reported Outcomes Measurement Information System(®) Sexual Function and Satisfaction (PROMIS(®) SexFS; National Institutes of Health) measures, version 1.0, for cancer populations.To develop a customizable self-report measure of sexual function and satisfaction as part of the U.S. National Institutes of Health PROMIS Network.Our multidisciplinary working group followed a comprehensive protocol for developing psychometrically robust patient-reported outcome measures including qualitative (scale development) and quantitative (psychometric evaluation) development. We performed an extensive literature review, conducted 16 focus groups with cancer patients and multiple discussions with clinicians, and evaluated candidate items in cognitive testing with patients. We administered items to 819 cancer patients. Items were calibrated using item-response theory and evaluated for reliability and validity.The PROMIS SexFS measures, version 1.0, include 81 items in 11 domains: Interest in Sexual Activity, Lubrication, Vaginal Discomfort, Erectile Function, Global Satisfaction with Sex Life, Orgasm, Anal Discomfort, Therapeutic Aids, Sexual Activities, Interfering Factors, and Screener Questions.In addition to content validity (patients indicate that items cover important aspects of their experiences) and face validity (patients indicate that items measure sexual function and satisfaction), the measure shows evidence for discriminant validity (domains discriminate between groups expected to be different) and convergent validity (strong correlations between scores on PROMIS and scores on conceptually similar older measures of sexual function), as well as favorable test-retest reliability among people not expected to change (interclass correlations from two administrations of the instrument, 1 month apart).The PROMIS SexFS offers researchers a reliable and valid set of tools to measure self-reported sexual function and satisfaction among diverse men and women. The measures are customizable; researchers can select the relevant domains and items comprising those domains for their study.

Authors
Flynn, KE; Lin, L; Cyranowski, JM; Reeve, BB; Reese, JB; Jeffery, DD; Smith, AW; Porter, LS; Dombeck, CB; Bruner, DW; Keefe, FJ; Weinfurt, KP
MLA Citation
Flynn, KE, Lin, L, Cyranowski, JM, Reeve, BB, Reese, JB, Jeffery, DD, Smith, AW, Porter, LS, Dombeck, CB, Bruner, DW, Keefe, FJ, and Weinfurt, KP. "Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer." The journal of sexual medicine 10 Suppl 1 (February 2013): 43-52.
PMID
23387911
Source
pubmed
Published In
The Journal of Sexual Medicine
Volume
10 Suppl 1
Publish Date
2013
Start Page
43
End Page
52
DOI
10.1111/j.1743-6109.2012.02995.x

Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer.

We describe the development and validation of the Patient-Reported Outcomes Measurement Information System(®) Sexual Function and Satisfaction (PROMIS(®) SexFS; National Institutes of Health) measures, version 1.0, for cancer populations.To develop a customizable self-report measure of sexual function and satisfaction as part of the U.S. National Institutes of Health PROMIS Network.Our multidisciplinary working group followed a comprehensive protocol for developing psychometrically robust patient-reported outcome measures including qualitative (scale development) and quantitative (psychometric evaluation) development. We performed an extensive literature review, conducted 16 focus groups with cancer patients and multiple discussions with clinicians, and evaluated candidate items in cognitive testing with patients. We administered items to 819 cancer patients. Items were calibrated using item-response theory and evaluated for reliability and validity.The PROMIS SexFS measures, version 1.0, include 81 items in 11 domains: Interest in Sexual Activity, Lubrication, Vaginal Discomfort, Erectile Function, Global Satisfaction with Sex Life, Orgasm, Anal Discomfort, Therapeutic Aids, Sexual Activities, Interfering Factors, and Screener Questions.In addition to content validity (patients indicate that items cover important aspects of their experiences) and face validity (patients indicate that items measure sexual function and satisfaction), the measure shows evidence for discriminant validity (domains discriminate between groups expected to be different) and convergent validity (strong correlations between scores on PROMIS and scores on conceptually similar older measures of sexual function), as well as favorable test-retest reliability among people not expected to change (interclass correlations from two administrations of the instrument, 1 month apart).The PROMIS SexFS offers researchers a reliable and valid set of tools to measure self-reported sexual function and satisfaction among diverse men and women. The measures are customizable; researchers can select the relevant domains and items comprising those domains for their study.

Authors
Flynn, KE; Lin, L; Cyranowski, JM; Reeve, BB; Reese, JB; Jeffery, DD; Smith, AW; Porter, LS; Dombeck, CB; Bruner, DW; Keefe, FJ; Weinfurt, KP
MLA Citation
Flynn, KE, Lin, L, Cyranowski, JM, Reeve, BB, Reese, JB, Jeffery, DD, Smith, AW, Porter, LS, Dombeck, CB, Bruner, DW, Keefe, FJ, and Weinfurt, KP. "Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer." J Sex Med 10 Suppl 1 (February 2013): 43-52.
PMID
23387911
Source
pubmed
Published In
The Journal of Sexual Medicine
Volume
10 Suppl 1
Publish Date
2013
Start Page
43
End Page
52
DOI
10.1111/j.1743-6109.2012.02995.x

Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer.

We describe the development and validation of the Patient-Reported Outcomes Measurement Information System(®) Sexual Function and Satisfaction (PROMIS(®) SexFS; National Institutes of Health) measures, version 1.0, for cancer populations.To develop a customizable self-report measure of sexual function and satisfaction as part of the U.S. National Institutes of Health PROMIS Network.Our multidisciplinary working group followed a comprehensive protocol for developing psychometrically robust patient-reported outcome measures including qualitative (scale development) and quantitative (psychometric evaluation) development. We performed an extensive literature review, conducted 16 focus groups with cancer patients and multiple discussions with clinicians, and evaluated candidate items in cognitive testing with patients. We administered items to 819 cancer patients. Items were calibrated using item-response theory and evaluated for reliability and validity.The PROMIS SexFS measures, version 1.0, include 81 items in 11 domains: Interest in Sexual Activity, Lubrication, Vaginal Discomfort, Erectile Function, Global Satisfaction with Sex Life, Orgasm, Anal Discomfort, Therapeutic Aids, Sexual Activities, Interfering Factors, and Screener Questions.In addition to content validity (patients indicate that items cover important aspects of their experiences) and face validity (patients indicate that items measure sexual function and satisfaction), the measure shows evidence for discriminant validity (domains discriminate between groups expected to be different) and convergent validity (strong correlations between scores on PROMIS and scores on conceptually similar older measures of sexual function), as well as favorable test-retest reliability among people not expected to change (interclass correlations from two administrations of the instrument, 1 month apart).The PROMIS SexFS offers researchers a reliable and valid set of tools to measure self-reported sexual function and satisfaction among diverse men and women. The measures are customizable; researchers can select the relevant domains and items comprising those domains for their study.

Authors
Flynn, KE; Lin, L; Cyranowski, JM; Reeve, BB; Reese, JB; Jeffery, DD; Smith, AW; Porter, LS; Dombeck, CB; Bruner, DW; Keefe, FJ; Weinfurt, KP
MLA Citation
Flynn, KE, Lin, L, Cyranowski, JM, Reeve, BB, Reese, JB, Jeffery, DD, Smith, AW, Porter, LS, Dombeck, CB, Bruner, DW, Keefe, FJ, and Weinfurt, KP. "Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer." J Sex Med 10 Suppl 1 (February 2013): 43-52.
PMID
23387911
Source
pubmed
Published In
The Journal of Sexual Medicine
Volume
10 Suppl 1
Publish Date
2013
Start Page
43
End Page
52
DOI
10.1111/j.1743-6109.2012.02995.x

Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer.

We describe the development and validation of the Patient-Reported Outcomes Measurement Information System(®) Sexual Function and Satisfaction (PROMIS(®) SexFS; National Institutes of Health) measures, version 1.0, for cancer populations.To develop a customizable self-report measure of sexual function and satisfaction as part of the U.S. National Institutes of Health PROMIS Network.Our multidisciplinary working group followed a comprehensive protocol for developing psychometrically robust patient-reported outcome measures including qualitative (scale development) and quantitative (psychometric evaluation) development. We performed an extensive literature review, conducted 16 focus groups with cancer patients and multiple discussions with clinicians, and evaluated candidate items in cognitive testing with patients. We administered items to 819 cancer patients. Items were calibrated using item-response theory and evaluated for reliability and validity.The PROMIS SexFS measures, version 1.0, include 81 items in 11 domains: Interest in Sexual Activity, Lubrication, Vaginal Discomfort, Erectile Function, Global Satisfaction with Sex Life, Orgasm, Anal Discomfort, Therapeutic Aids, Sexual Activities, Interfering Factors, and Screener Questions.In addition to content validity (patients indicate that items cover important aspects of their experiences) and face validity (patients indicate that items measure sexual function and satisfaction), the measure shows evidence for discriminant validity (domains discriminate between groups expected to be different) and convergent validity (strong correlations between scores on PROMIS and scores on conceptually similar older measures of sexual function), as well as favorable test-retest reliability among people not expected to change (interclass correlations from two administrations of the instrument, 1 month apart).The PROMIS SexFS offers researchers a reliable and valid set of tools to measure self-reported sexual function and satisfaction among diverse men and women. The measures are customizable; researchers can select the relevant domains and items comprising those domains for their study.

Authors
Flynn, KE; Lin, L; Cyranowski, JM; Reeve, BB; Reese, JB; Jeffery, DD; Smith, AW; Porter, LS; Dombeck, CB; Bruner, DW; Keefe, FJ; Weinfurt, KP
MLA Citation
Flynn, KE, Lin, L, Cyranowski, JM, Reeve, BB, Reese, JB, Jeffery, DD, Smith, AW, Porter, LS, Dombeck, CB, Bruner, DW, Keefe, FJ, and Weinfurt, KP. "Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer." J Sex Med 10 Suppl 1 (February 2013): 43-52.
PMID
23387911
Source
pubmed
Published In
The Journal of Sexual Medicine
Volume
10 Suppl 1
Publish Date
2013
Start Page
43
End Page
52
DOI
10.1111/j.1743-6109.2012.02995.x

Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer.

We describe the development and validation of the Patient-Reported Outcomes Measurement Information System(®) Sexual Function and Satisfaction (PROMIS(®) SexFS; National Institutes of Health) measures, version 1.0, for cancer populations.To develop a customizable self-report measure of sexual function and satisfaction as part of the U.S. National Institutes of Health PROMIS Network.Our multidisciplinary working group followed a comprehensive protocol for developing psychometrically robust patient-reported outcome measures including qualitative (scale development) and quantitative (psychometric evaluation) development. We performed an extensive literature review, conducted 16 focus groups with cancer patients and multiple discussions with clinicians, and evaluated candidate items in cognitive testing with patients. We administered items to 819 cancer patients. Items were calibrated using item-response theory and evaluated for reliability and validity.The PROMIS SexFS measures, version 1.0, include 81 items in 11 domains: Interest in Sexual Activity, Lubrication, Vaginal Discomfort, Erectile Function, Global Satisfaction with Sex Life, Orgasm, Anal Discomfort, Therapeutic Aids, Sexual Activities, Interfering Factors, and Screener Questions.In addition to content validity (patients indicate that items cover important aspects of their experiences) and face validity (patients indicate that items measure sexual function and satisfaction), the measure shows evidence for discriminant validity (domains discriminate between groups expected to be different) and convergent validity (strong correlations between scores on PROMIS and scores on conceptually similar older measures of sexual function), as well as favorable test-retest reliability among people not expected to change (interclass correlations from two administrations of the instrument, 1 month apart).The PROMIS SexFS offers researchers a reliable and valid set of tools to measure self-reported sexual function and satisfaction among diverse men and women. The measures are customizable; researchers can select the relevant domains and items comprising those domains for their study.

Authors
Flynn, KE; Lin, L; Cyranowski, JM; Reeve, BB; Reese, JB; Jeffery, DD; Smith, AW; Porter, LS; Dombeck, CB; Bruner, DW; Keefe, FJ; Weinfurt, KP
MLA Citation
Flynn, KE, Lin, L, Cyranowski, JM, Reeve, BB, Reese, JB, Jeffery, DD, Smith, AW, Porter, LS, Dombeck, CB, Bruner, DW, Keefe, FJ, and Weinfurt, KP. "Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer." J Sex Med 10 Suppl 1 (February 2013): 43-52.
PMID
23387911
Source
pubmed
Published In
The Journal of Sexual Medicine
Volume
10 Suppl 1
Publish Date
2013
Start Page
43
End Page
52
DOI
10.1111/j.1743-6109.2012.02995.x

Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer.

We describe the development and validation of the Patient-Reported Outcomes Measurement Information System(®) Sexual Function and Satisfaction (PROMIS(®) SexFS; National Institutes of Health) measures, version 1.0, for cancer populations.To develop a customizable self-report measure of sexual function and satisfaction as part of the U.S. National Institutes of Health PROMIS Network.Our multidisciplinary working group followed a comprehensive protocol for developing psychometrically robust patient-reported outcome measures including qualitative (scale development) and quantitative (psychometric evaluation) development. We performed an extensive literature review, conducted 16 focus groups with cancer patients and multiple discussions with clinicians, and evaluated candidate items in cognitive testing with patients. We administered items to 819 cancer patients. Items were calibrated using item-response theory and evaluated for reliability and validity.The PROMIS SexFS measures, version 1.0, include 81 items in 11 domains: Interest in Sexual Activity, Lubrication, Vaginal Discomfort, Erectile Function, Global Satisfaction with Sex Life, Orgasm, Anal Discomfort, Therapeutic Aids, Sexual Activities, Interfering Factors, and Screener Questions.In addition to content validity (patients indicate that items cover important aspects of their experiences) and face validity (patients indicate that items measure sexual function and satisfaction), the measure shows evidence for discriminant validity (domains discriminate between groups expected to be different) and convergent validity (strong correlations between scores on PROMIS and scores on conceptually similar older measures of sexual function), as well as favorable test-retest reliability among people not expected to change (interclass correlations from two administrations of the instrument, 1 month apart).The PROMIS SexFS offers researchers a reliable and valid set of tools to measure self-reported sexual function and satisfaction among diverse men and women. The measures are customizable; researchers can select the relevant domains and items comprising those domains for their study.

Authors
Flynn, KE; Lin, L; Cyranowski, JM; Reeve, BB; Reese, JB; Jeffery, DD; Smith, AW; Porter, LS; Dombeck, CB; Bruner, DW; Keefe, FJ; Weinfurt, KP
MLA Citation
Flynn, KE, Lin, L, Cyranowski, JM, Reeve, BB, Reese, JB, Jeffery, DD, Smith, AW, Porter, LS, Dombeck, CB, Bruner, DW, Keefe, FJ, and Weinfurt, KP. "Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer." The journal of sexual medicine 10 Suppl 1 (February 2013): 43-52.
PMID
23387911
Source
pubmed
Published In
The Journal of Sexual Medicine
Volume
10 Suppl 1
Publish Date
2013
Start Page
43
End Page
52
DOI
10.1111/j.1743-6109.2012.02995.x

Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer.

We describe the development and validation of the Patient-Reported Outcomes Measurement Information System(®) Sexual Function and Satisfaction (PROMIS(®) SexFS; National Institutes of Health) measures, version 1.0, for cancer populations.To develop a customizable self-report measure of sexual function and satisfaction as part of the U.S. National Institutes of Health PROMIS Network.Our multidisciplinary working group followed a comprehensive protocol for developing psychometrically robust patient-reported outcome measures including qualitative (scale development) and quantitative (psychometric evaluation) development. We performed an extensive literature review, conducted 16 focus groups with cancer patients and multiple discussions with clinicians, and evaluated candidate items in cognitive testing with patients. We administered items to 819 cancer patients. Items were calibrated using item-response theory and evaluated for reliability and validity.The PROMIS SexFS measures, version 1.0, include 81 items in 11 domains: Interest in Sexual Activity, Lubrication, Vaginal Discomfort, Erectile Function, Global Satisfaction with Sex Life, Orgasm, Anal Discomfort, Therapeutic Aids, Sexual Activities, Interfering Factors, and Screener Questions.In addition to content validity (patients indicate that items cover important aspects of their experiences) and face validity (patients indicate that items measure sexual function and satisfaction), the measure shows evidence for discriminant validity (domains discriminate between groups expected to be different) and convergent validity (strong correlations between scores on PROMIS and scores on conceptually similar older measures of sexual function), as well as favorable test-retest reliability among people not expected to change (interclass correlations from two administrations of the instrument, 1 month apart).The PROMIS SexFS offers researchers a reliable and valid set of tools to measure self-reported sexual function and satisfaction among diverse men and women. The measures are customizable; researchers can select the relevant domains and items comprising those domains for their study.

Authors
Flynn, KE; Lin, L; Cyranowski, JM; Reeve, BB; Reese, JB; Jeffery, DD; Smith, AW; Porter, LS; Dombeck, CB; Bruner, DW; Keefe, FJ; Weinfurt, KP
MLA Citation
Flynn, KE, Lin, L, Cyranowski, JM, Reeve, BB, Reese, JB, Jeffery, DD, Smith, AW, Porter, LS, Dombeck, CB, Bruner, DW, Keefe, FJ, and Weinfurt, KP. "Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer." The journal of sexual medicine 10 Suppl 1 (February 2013): 43-52.
PMID
23387911
Source
pubmed
Published In
The Journal of Sexual Medicine
Volume
10 Suppl 1
Publish Date
2013
Start Page
43
End Page
52
DOI
10.1111/j.1743-6109.2012.02995.x

Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer.

We describe the development and validation of the Patient-Reported Outcomes Measurement Information System(®) Sexual Function and Satisfaction (PROMIS(®) SexFS; National Institutes of Health) measures, version 1.0, for cancer populations.To develop a customizable self-report measure of sexual function and satisfaction as part of the U.S. National Institutes of Health PROMIS Network.Our multidisciplinary working group followed a comprehensive protocol for developing psychometrically robust patient-reported outcome measures including qualitative (scale development) and quantitative (psychometric evaluation) development. We performed an extensive literature review, conducted 16 focus groups with cancer patients and multiple discussions with clinicians, and evaluated candidate items in cognitive testing with patients. We administered items to 819 cancer patients. Items were calibrated using item-response theory and evaluated for reliability and validity.The PROMIS SexFS measures, version 1.0, include 81 items in 11 domains: Interest in Sexual Activity, Lubrication, Vaginal Discomfort, Erectile Function, Global Satisfaction with Sex Life, Orgasm, Anal Discomfort, Therapeutic Aids, Sexual Activities, Interfering Factors, and Screener Questions.In addition to content validity (patients indicate that items cover important aspects of their experiences) and face validity (patients indicate that items measure sexual function and satisfaction), the measure shows evidence for discriminant validity (domains discriminate between groups expected to be different) and convergent validity (strong correlations between scores on PROMIS and scores on conceptually similar older measures of sexual function), as well as favorable test-retest reliability among people not expected to change (interclass correlations from two administrations of the instrument, 1 month apart).The PROMIS SexFS offers researchers a reliable and valid set of tools to measure self-reported sexual function and satisfaction among diverse men and women. The measures are customizable; researchers can select the relevant domains and items comprising those domains for their study.

Authors
Flynn, KE; Lin, L; Cyranowski, JM; Reeve, BB; Reese, JB; Jeffery, DD; Smith, AW; Porter, LS; Dombeck, CB; Bruner, DW; Keefe, FJ; Weinfurt, KP
MLA Citation
Flynn, KE, Lin, L, Cyranowski, JM, Reeve, BB, Reese, JB, Jeffery, DD, Smith, AW, Porter, LS, Dombeck, CB, Bruner, DW, Keefe, FJ, and Weinfurt, KP. "Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer." The journal of sexual medicine 10 Suppl 1 (February 2013): 43-52.
PMID
23387911
Source
pubmed
Published In
The Journal of Sexual Medicine
Volume
10 Suppl 1
Publish Date
2013
Start Page
43
End Page
52
DOI
10.1111/j.1743-6109.2012.02995.x

Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer.

We describe the development and validation of the Patient-Reported Outcomes Measurement Information System(®) Sexual Function and Satisfaction (PROMIS(®) SexFS; National Institutes of Health) measures, version 1.0, for cancer populations.To develop a customizable self-report measure of sexual function and satisfaction as part of the U.S. National Institutes of Health PROMIS Network.Our multidisciplinary working group followed a comprehensive protocol for developing psychometrically robust patient-reported outcome measures including qualitative (scale development) and quantitative (psychometric evaluation) development. We performed an extensive literature review, conducted 16 focus groups with cancer patients and multiple discussions with clinicians, and evaluated candidate items in cognitive testing with patients. We administered items to 819 cancer patients. Items were calibrated using item-response theory and evaluated for reliability and validity.The PROMIS SexFS measures, version 1.0, include 81 items in 11 domains: Interest in Sexual Activity, Lubrication, Vaginal Discomfort, Erectile Function, Global Satisfaction with Sex Life, Orgasm, Anal Discomfort, Therapeutic Aids, Sexual Activities, Interfering Factors, and Screener Questions.In addition to content validity (patients indicate that items cover important aspects of their experiences) and face validity (patients indicate that items measure sexual function and satisfaction), the measure shows evidence for discriminant validity (domains discriminate between groups expected to be different) and convergent validity (strong correlations between scores on PROMIS and scores on conceptually similar older measures of sexual function), as well as favorable test-retest reliability among people not expected to change (interclass correlations from two administrations of the instrument, 1 month apart).The PROMIS SexFS offers researchers a reliable and valid set of tools to measure self-reported sexual function and satisfaction among diverse men and women. The measures are customizable; researchers can select the relevant domains and items comprising those domains for their study.

Authors
Flynn, KE; Lin, L; Cyranowski, JM; Reeve, BB; Reese, JB; Jeffery, DD; Smith, AW; Porter, LS; Dombeck, CB; Bruner, DW; Keefe, FJ; Weinfurt, KP
MLA Citation
Flynn, KE, Lin, L, Cyranowski, JM, Reeve, BB, Reese, JB, Jeffery, DD, Smith, AW, Porter, LS, Dombeck, CB, Bruner, DW, Keefe, FJ, and Weinfurt, KP. "Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer." The journal of sexual medicine 10 Suppl 1 (February 2013): 43-52.
PMID
23387911
Source
pubmed
Published In
The Journal of Sexual Medicine
Volume
10 Suppl 1
Publish Date
2013
Start Page
43
End Page
52
DOI
10.1111/j.1743-6109.2012.02995.x

Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer.

INTRODUCTION: We describe the development and validation of the Patient-Reported Outcomes Measurement Information System(®) Sexual Function and Satisfaction (PROMIS(®) SexFS; National Institutes of Health) measures, version 1.0, for cancer populations. AIM: To develop a customizable self-report measure of sexual function and satisfaction as part of the U.S. National Institutes of Health PROMIS Network. METHODS: Our multidisciplinary working group followed a comprehensive protocol for developing psychometrically robust patient-reported outcome measures including qualitative (scale development) and quantitative (psychometric evaluation) development. We performed an extensive literature review, conducted 16 focus groups with cancer patients and multiple discussions with clinicians, and evaluated candidate items in cognitive testing with patients. We administered items to 819 cancer patients. Items were calibrated using item-response theory and evaluated for reliability and validity. MAIN OUTCOME MEASURES: The PROMIS SexFS measures, version 1.0, include 81 items in 11 domains: Interest in Sexual Activity, Lubrication, Vaginal Discomfort, Erectile Function, Global Satisfaction with Sex Life, Orgasm, Anal Discomfort, Therapeutic Aids, Sexual Activities, Interfering Factors, and Screener Questions. RESULTS: In addition to content validity (patients indicate that items cover important aspects of their experiences) and face validity (patients indicate that items measure sexual function and satisfaction), the measure shows evidence for discriminant validity (domains discriminate between groups expected to be different) and convergent validity (strong correlations between scores on PROMIS and scores on conceptually similar older measures of sexual function), as well as favorable test-retest reliability among people not expected to change (interclass correlations from two administrations of the instrument, 1 month apart). CONCLUSIONS: The PROMIS SexFS offers researchers a reliable and valid set of tools to measure self-reported sexual function and satisfaction among diverse men and women. The measures are customizable; researchers can select the relevant domains and items comprising those domains for their study.

Authors
Flynn, KE; Lin, L; Cyranowski, JM; Reeve, BB; Reese, JB; Jeffery, DD; Smith, AW; Porter, LS; Dombeck, CB; Bruner, DW; Keefe, FJ; Weinfurt, KP
MLA Citation
Flynn, KE, Lin, L, Cyranowski, JM, Reeve, BB, Reese, JB, Jeffery, DD, Smith, AW, Porter, LS, Dombeck, CB, Bruner, DW, Keefe, FJ, and Weinfurt, KP. "Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer." J Sex Med 10 Suppl 1 (February 2013): 43-52.
PMID
23387911
Source
epmc
Published In
The Journal of Sexual Medicine
Volume
10 Suppl 1
Publish Date
2013
Start Page
43
End Page
52
DOI
10.1111/j.1743-6109.2012.02995.x

Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer.

INTRODUCTION: We describe the development and validation of the Patient-Reported Outcomes Measurement Information System(®) Sexual Function and Satisfaction (PROMIS(®) SexFS; National Institutes of Health) measures, version 1.0, for cancer populations. AIM: To develop a customizable self-report measure of sexual function and satisfaction as part of the U.S. National Institutes of Health PROMIS Network. METHODS: Our multidisciplinary working group followed a comprehensive protocol for developing psychometrically robust patient-reported outcome measures including qualitative (scale development) and quantitative (psychometric evaluation) development. We performed an extensive literature review, conducted 16 focus groups with cancer patients and multiple discussions with clinicians, and evaluated candidate items in cognitive testing with patients. We administered items to 819 cancer patients. Items were calibrated using item-response theory and evaluated for reliability and validity. MAIN OUTCOME MEASURES: The PROMIS SexFS measures, version 1.0, include 81 items in 11 domains: Interest in Sexual Activity, Lubrication, Vaginal Discomfort, Erectile Function, Global Satisfaction with Sex Life, Orgasm, Anal Discomfort, Therapeutic Aids, Sexual Activities, Interfering Factors, and Screener Questions. RESULTS: In addition to content validity (patients indicate that items cover important aspects of their experiences) and face validity (patients indicate that items measure sexual function and satisfaction), the measure shows evidence for discriminant validity (domains discriminate between groups expected to be different) and convergent validity (strong correlations between scores on PROMIS and scores on conceptually similar older measures of sexual function), as well as favorable test-retest reliability among people not expected to change (interclass correlations from two administrations of the instrument, 1 month apart). CONCLUSIONS: The PROMIS SexFS offers researchers a reliable and valid set of tools to measure self-reported sexual function and satisfaction among diverse men and women. The measures are customizable; researchers can select the relevant domains and items comprising those domains for their study.

Authors
Flynn, KE; Lin, L; Cyranowski, JM; Reeve, BB; Reese, JB; Jeffery, DD; Smith, AW; Porter, LS; Dombeck, CB; Bruner, DW; Keefe, FJ; Weinfurt, KP
MLA Citation
Flynn, KE, Lin, L, Cyranowski, JM, Reeve, BB, Reese, JB, Jeffery, DD, Smith, AW, Porter, LS, Dombeck, CB, Bruner, DW, Keefe, FJ, and Weinfurt, KP. "Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer." J Sex Med 10 Suppl 1 (February 2013): 43-52.
PMID
23387911
Source
epmc
Published In
The Journal of Sexual Medicine
Volume
10 Suppl 1
Publish Date
2013
Start Page
43
End Page
52
DOI
10.1111/j.1743-6109.2012.02995.x

Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer.

INTRODUCTION: We describe the development and validation of the Patient-Reported Outcomes Measurement Information System(®) Sexual Function and Satisfaction (PROMIS(®) SexFS; National Institutes of Health) measures, version 1.0, for cancer populations. AIM: To develop a customizable self-report measure of sexual function and satisfaction as part of the U.S. National Institutes of Health PROMIS Network. METHODS: Our multidisciplinary working group followed a comprehensive protocol for developing psychometrically robust patient-reported outcome measures including qualitative (scale development) and quantitative (psychometric evaluation) development. We performed an extensive literature review, conducted 16 focus groups with cancer patients and multiple discussions with clinicians, and evaluated candidate items in cognitive testing with patients. We administered items to 819 cancer patients. Items were calibrated using item-response theory and evaluated for reliability and validity. MAIN OUTCOME MEASURES: The PROMIS SexFS measures, version 1.0, include 81 items in 11 domains: Interest in Sexual Activity, Lubrication, Vaginal Discomfort, Erectile Function, Global Satisfaction with Sex Life, Orgasm, Anal Discomfort, Therapeutic Aids, Sexual Activities, Interfering Factors, and Screener Questions. RESULTS: In addition to content validity (patients indicate that items cover important aspects of their experiences) and face validity (patients indicate that items measure sexual function and satisfaction), the measure shows evidence for discriminant validity (domains discriminate between groups expected to be different) and convergent validity (strong correlations between scores on PROMIS and scores on conceptually similar older measures of sexual function), as well as favorable test-retest reliability among people not expected to change (interclass correlations from two administrations of the instrument, 1 month apart). CONCLUSIONS: The PROMIS SexFS offers researchers a reliable and valid set of tools to measure self-reported sexual function and satisfaction among diverse men and women. The measures are customizable; researchers can select the relevant domains and items comprising those domains for their study.

Authors
Flynn, KE; Lin, L; Cyranowski, JM; Reeve, BB; Reese, JB; Jeffery, DD; Smith, AW; Porter, LS; Dombeck, CB; Bruner, DW; Keefe, FJ; Weinfurt, KP
MLA Citation
Flynn, KE, Lin, L, Cyranowski, JM, Reeve, BB, Reese, JB, Jeffery, DD, Smith, AW, Porter, LS, Dombeck, CB, Bruner, DW, Keefe, FJ, and Weinfurt, KP. "Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer." J Sex Med 10 Suppl 1 (February 2013): 43-52.
PMID
23387911
Source
epmc
Published In
The Journal of Sexual Medicine
Volume
10 Suppl 1
Publish Date
2013
Start Page
43
End Page
52
DOI
10.1111/j.1743-6109.2012.02995.x

Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer.

INTRODUCTION: We describe the development and validation of the Patient-Reported Outcomes Measurement Information System(®) Sexual Function and Satisfaction (PROMIS(®) SexFS; National Institutes of Health) measures, version 1.0, for cancer populations. AIM: To develop a customizable self-report measure of sexual function and satisfaction as part of the U.S. National Institutes of Health PROMIS Network. METHODS: Our multidisciplinary working group followed a comprehensive protocol for developing psychometrically robust patient-reported outcome measures including qualitative (scale development) and quantitative (psychometric evaluation) development. We performed an extensive literature review, conducted 16 focus groups with cancer patients and multiple discussions with clinicians, and evaluated candidate items in cognitive testing with patients. We administered items to 819 cancer patients. Items were calibrated using item-response theory and evaluated for reliability and validity. MAIN OUTCOME MEASURES: The PROMIS SexFS measures, version 1.0, include 81 items in 11 domains: Interest in Sexual Activity, Lubrication, Vaginal Discomfort, Erectile Function, Global Satisfaction with Sex Life, Orgasm, Anal Discomfort, Therapeutic Aids, Sexual Activities, Interfering Factors, and Screener Questions. RESULTS: In addition to content validity (patients indicate that items cover important aspects of their experiences) and face validity (patients indicate that items measure sexual function and satisfaction), the measure shows evidence for discriminant validity (domains discriminate between groups expected to be different) and convergent validity (strong correlations between scores on PROMIS and scores on conceptually similar older measures of sexual function), as well as favorable test-retest reliability among people not expected to change (interclass correlations from two administrations of the instrument, 1 month apart). CONCLUSIONS: The PROMIS SexFS offers researchers a reliable and valid set of tools to measure self-reported sexual function and satisfaction among diverse men and women. The measures are customizable; researchers can select the relevant domains and items comprising those domains for their study.

Authors
Flynn, KE; Lin, L; Cyranowski, JM; Reeve, BB; Reese, JB; Jeffery, DD; Smith, AW; Porter, LS; Dombeck, CB; Bruner, DW; Keefe, FJ; Weinfurt, KP
MLA Citation
Flynn, KE, Lin, L, Cyranowski, JM, Reeve, BB, Reese, JB, Jeffery, DD, Smith, AW, Porter, LS, Dombeck, CB, Bruner, DW, Keefe, FJ, and Weinfurt, KP. "Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer." J Sex Med 10 Suppl 1 (February 2013): 43-52.
PMID
23387911
Source
epmc
Published In
The Journal of Sexual Medicine
Volume
10 Suppl 1
Publish Date
2013
Start Page
43
End Page
52
DOI
10.1111/j.1743-6109.2012.02995.x

Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer.

INTRODUCTION: We describe the development and validation of the Patient-Reported Outcomes Measurement Information System(®) Sexual Function and Satisfaction (PROMIS(®) SexFS; National Institutes of Health) measures, version 1.0, for cancer populations. AIM: To develop a customizable self-report measure of sexual function and satisfaction as part of the U.S. National Institutes of Health PROMIS Network. METHODS: Our multidisciplinary working group followed a comprehensive protocol for developing psychometrically robust patient-reported outcome measures including qualitative (scale development) and quantitative (psychometric evaluation) development. We performed an extensive literature review, conducted 16 focus groups with cancer patients and multiple discussions with clinicians, and evaluated candidate items in cognitive testing with patients. We administered items to 819 cancer patients. Items were calibrated using item-response theory and evaluated for reliability and validity. MAIN OUTCOME MEASURES: The PROMIS SexFS measures, version 1.0, include 81 items in 11 domains: Interest in Sexual Activity, Lubrication, Vaginal Discomfort, Erectile Function, Global Satisfaction with Sex Life, Orgasm, Anal Discomfort, Therapeutic Aids, Sexual Activities, Interfering Factors, and Screener Questions. RESULTS: In addition to content validity (patients indicate that items cover important aspects of their experiences) and face validity (patients indicate that items measure sexual function and satisfaction), the measure shows evidence for discriminant validity (domains discriminate between groups expected to be different) and convergent validity (strong correlations between scores on PROMIS and scores on conceptually similar older measures of sexual function), as well as favorable test-retest reliability among people not expected to change (interclass correlations from two administrations of the instrument, 1 month apart). CONCLUSIONS: The PROMIS SexFS offers researchers a reliable and valid set of tools to measure self-reported sexual function and satisfaction among diverse men and women. The measures are customizable; researchers can select the relevant domains and items comprising those domains for their study.

Authors
Flynn, KE; Lin, L; Cyranowski, JM; Reeve, BB; Reese, JB; Jeffery, DD; Smith, AW; Porter, LS; Dombeck, CB; Bruner, DW; Keefe, FJ; Weinfurt, KP
MLA Citation
Flynn, KE, Lin, L, Cyranowski, JM, Reeve, BB, Reese, JB, Jeffery, DD, Smith, AW, Porter, LS, Dombeck, CB, Bruner, DW, Keefe, FJ, and Weinfurt, KP. "Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer." The journal of sexual medicine 10 Suppl 1 (February 2013): 43-52.
PMID
23387911
Source
epmc
Published In
The Journal of Sexual Medicine
Volume
10 Suppl 1
Publish Date
2013
Start Page
43
End Page
52
DOI
10.1111/j.1743-6109.2012.02995.x

Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer.

INTRODUCTION: We describe the development and validation of the Patient-Reported Outcomes Measurement Information System(®) Sexual Function and Satisfaction (PROMIS(®) SexFS; National Institutes of Health) measures, version 1.0, for cancer populations. AIM: To develop a customizable self-report measure of sexual function and satisfaction as part of the U.S. National Institutes of Health PROMIS Network. METHODS: Our multidisciplinary working group followed a comprehensive protocol for developing psychometrically robust patient-reported outcome measures including qualitative (scale development) and quantitative (psychometric evaluation) development. We performed an extensive literature review, conducted 16 focus groups with cancer patients and multiple discussions with clinicians, and evaluated candidate items in cognitive testing with patients. We administered items to 819 cancer patients. Items were calibrated using item-response theory and evaluated for reliability and validity. MAIN OUTCOME MEASURES: The PROMIS SexFS measures, version 1.0, include 81 items in 11 domains: Interest in Sexual Activity, Lubrication, Vaginal Discomfort, Erectile Function, Global Satisfaction with Sex Life, Orgasm, Anal Discomfort, Therapeutic Aids, Sexual Activities, Interfering Factors, and Screener Questions. RESULTS: In addition to content validity (patients indicate that items cover important aspects of their experiences) and face validity (patients indicate that items measure sexual function and satisfaction), the measure shows evidence for discriminant validity (domains discriminate between groups expected to be different) and convergent validity (strong correlations between scores on PROMIS and scores on conceptually similar older measures of sexual function), as well as favorable test-retest reliability among people not expected to change (interclass correlations from two administrations of the instrument, 1 month apart). CONCLUSIONS: The PROMIS SexFS offers researchers a reliable and valid set of tools to measure self-reported sexual function and satisfaction among diverse men and women. The measures are customizable; researchers can select the relevant domains and items comprising those domains for their study.

Authors
Flynn, KE; Lin, L; Cyranowski, JM; Reeve, BB; Reese, JB; Jeffery, DD; Smith, AW; Porter, LS; Dombeck, CB; Bruner, DW; Keefe, FJ; Weinfurt, KP
MLA Citation
Flynn, KE, Lin, L, Cyranowski, JM, Reeve, BB, Reese, JB, Jeffery, DD, Smith, AW, Porter, LS, Dombeck, CB, Bruner, DW, Keefe, FJ, and Weinfurt, KP. "Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer." The journal of sexual medicine 10 Suppl 1 (February 2013): 43-52.
PMID
23387911
Source
epmc
Published In
The Journal of Sexual Medicine
Volume
10 Suppl 1
Publish Date
2013
Start Page
43
End Page
52
DOI
10.1111/j.1743-6109.2012.02995.x

Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer.

INTRODUCTION: We describe the development and validation of the Patient-Reported Outcomes Measurement Information System(®) Sexual Function and Satisfaction (PROMIS(®) SexFS; National Institutes of Health) measures, version 1.0, for cancer populations. AIM: To develop a customizable self-report measure of sexual function and satisfaction as part of the U.S. National Institutes of Health PROMIS Network. METHODS: Our multidisciplinary working group followed a comprehensive protocol for developing psychometrically robust patient-reported outcome measures including qualitative (scale development) and quantitative (psychometric evaluation) development. We performed an extensive literature review, conducted 16 focus groups with cancer patients and multiple discussions with clinicians, and evaluated candidate items in cognitive testing with patients. We administered items to 819 cancer patients. Items were calibrated using item-response theory and evaluated for reliability and validity. MAIN OUTCOME MEASURES: The PROMIS SexFS measures, version 1.0, include 81 items in 11 domains: Interest in Sexual Activity, Lubrication, Vaginal Discomfort, Erectile Function, Global Satisfaction with Sex Life, Orgasm, Anal Discomfort, Therapeutic Aids, Sexual Activities, Interfering Factors, and Screener Questions. RESULTS: In addition to content validity (patients indicate that items cover important aspects of their experiences) and face validity (patients indicate that items measure sexual function and satisfaction), the measure shows evidence for discriminant validity (domains discriminate between groups expected to be different) and convergent validity (strong correlations between scores on PROMIS and scores on conceptually similar older measures of sexual function), as well as favorable test-retest reliability among people not expected to change (interclass correlations from two administrations of the instrument, 1 month apart). CONCLUSIONS: The PROMIS SexFS offers researchers a reliable and valid set of tools to measure self-reported sexual function and satisfaction among diverse men and women. The measures are customizable; researchers can select the relevant domains and items comprising those domains for their study.

Authors
Flynn, KE; Lin, L; Cyranowski, JM; Reeve, BB; Reese, JB; Jeffery, DD; Smith, AW; Porter, LS; Dombeck, CB; Bruner, DW; Keefe, FJ; Weinfurt, KP
MLA Citation
Flynn, KE, Lin, L, Cyranowski, JM, Reeve, BB, Reese, JB, Jeffery, DD, Smith, AW, Porter, LS, Dombeck, CB, Bruner, DW, Keefe, FJ, and Weinfurt, KP. "Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer." The journal of sexual medicine 10 Suppl 1 (February 2013): 43-52.
PMID
23387911
Source
epmc
Published In
The Journal of Sexual Medicine
Volume
10 Suppl 1
Publish Date
2013
Start Page
43
End Page
52
DOI
10.1111/j.1743-6109.2012.02995.x

Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer.

INTRODUCTION: We describe the development and validation of the Patient-Reported Outcomes Measurement Information System(®) Sexual Function and Satisfaction (PROMIS(®) SexFS; National Institutes of Health) measures, version 1.0, for cancer populations. AIM: To develop a customizable self-report measure of sexual function and satisfaction as part of the U.S. National Institutes of Health PROMIS Network. METHODS: Our multidisciplinary working group followed a comprehensive protocol for developing psychometrically robust patient-reported outcome measures including qualitative (scale development) and quantitative (psychometric evaluation) development. We performed an extensive literature review, conducted 16 focus groups with cancer patients and multiple discussions with clinicians, and evaluated candidate items in cognitive testing with patients. We administered items to 819 cancer patients. Items were calibrated using item-response theory and evaluated for reliability and validity. MAIN OUTCOME MEASURES: The PROMIS SexFS measures, version 1.0, include 81 items in 11 domains: Interest in Sexual Activity, Lubrication, Vaginal Discomfort, Erectile Function, Global Satisfaction with Sex Life, Orgasm, Anal Discomfort, Therapeutic Aids, Sexual Activities, Interfering Factors, and Screener Questions. RESULTS: In addition to content validity (patients indicate that items cover important aspects of their experiences) and face validity (patients indicate that items measure sexual function and satisfaction), the measure shows evidence for discriminant validity (domains discriminate between groups expected to be different) and convergent validity (strong correlations between scores on PROMIS and scores on conceptually similar older measures of sexual function), as well as favorable test-retest reliability among people not expected to change (interclass correlations from two administrations of the instrument, 1 month apart). CONCLUSIONS: The PROMIS SexFS offers researchers a reliable and valid set of tools to measure self-reported sexual function and satisfaction among diverse men and women. The measures are customizable; researchers can select the relevant domains and items comprising those domains for their study.

Authors
Flynn, KE; Lin, L; Cyranowski, JM; Reeve, BB; Reese, JB; Jeffery, DD; Smith, AW; Porter, LS; Dombeck, CB; Bruner, DW; Keefe, FJ; Weinfurt, KP
MLA Citation
Flynn, KE, Lin, L, Cyranowski, JM, Reeve, BB, Reese, JB, Jeffery, DD, Smith, AW, Porter, LS, Dombeck, CB, Bruner, DW, Keefe, FJ, and Weinfurt, KP. "Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer." The journal of sexual medicine 10 Suppl 1 (February 2013): 43-52.
PMID
23387911
Source
epmc
Published In
The Journal of Sexual Medicine
Volume
10 Suppl 1
Publish Date
2013
Start Page
43
End Page
52
DOI
10.1111/j.1743-6109.2012.02995.x

Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer.

INTRODUCTION: We describe the development and validation of the Patient-Reported Outcomes Measurement Information System(®) Sexual Function and Satisfaction (PROMIS(®) SexFS; National Institutes of Health) measures, version 1.0, for cancer populations. AIM: To develop a customizable self-report measure of sexual function and satisfaction as part of the U.S. National Institutes of Health PROMIS Network. METHODS: Our multidisciplinary working group followed a comprehensive protocol for developing psychometrically robust patient-reported outcome measures including qualitative (scale development) and quantitative (psychometric evaluation) development. We performed an extensive literature review, conducted 16 focus groups with cancer patients and multiple discussions with clinicians, and evaluated candidate items in cognitive testing with patients. We administered items to 819 cancer patients. Items were calibrated using item-response theory and evaluated for reliability and validity. MAIN OUTCOME MEASURES: The PROMIS SexFS measures, version 1.0, include 81 items in 11 domains: Interest in Sexual Activity, Lubrication, Vaginal Discomfort, Erectile Function, Global Satisfaction with Sex Life, Orgasm, Anal Discomfort, Therapeutic Aids, Sexual Activities, Interfering Factors, and Screener Questions. RESULTS: In addition to content validity (patients indicate that items cover important aspects of their experiences) and face validity (patients indicate that items measure sexual function and satisfaction), the measure shows evidence for discriminant validity (domains discriminate between groups expected to be different) and convergent validity (strong correlations between scores on PROMIS and scores on conceptually similar older measures of sexual function), as well as favorable test-retest reliability among people not expected to change (interclass correlations from two administrations of the instrument, 1 month apart). CONCLUSIONS: The PROMIS SexFS offers researchers a reliable and valid set of tools to measure self-reported sexual function and satisfaction among diverse men and women. The measures are customizable; researchers can select the relevant domains and items comprising those domains for their study.

Authors
Flynn, KE; Lin, L; Cyranowski, JM; Reeve, BB; Reese, JB; Jeffery, DD; Smith, AW; Porter, LS; Dombeck, CB; Bruner, DW; Keefe, FJ; Weinfurt, KP
MLA Citation
Flynn, KE, Lin, L, Cyranowski, JM, Reeve, BB, Reese, JB, Jeffery, DD, Smith, AW, Porter, LS, Dombeck, CB, Bruner, DW, Keefe, FJ, and Weinfurt, KP. "Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer." J Sex Med 10 Suppl 1 (February 2013): 43-52.
PMID
23387911
Source
epmc
Published In
The Journal of Sexual Medicine
Volume
10 Suppl 1
Publish Date
2013
Start Page
43
End Page
52
DOI
10.1111/j.1743-6109.2012.02995.x

Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer.

INTRODUCTION: We describe the development and validation of the Patient-Reported Outcomes Measurement Information System(®) Sexual Function and Satisfaction (PROMIS(®) SexFS; National Institutes of Health) measures, version 1.0, for cancer populations. AIM: To develop a customizable self-report measure of sexual function and satisfaction as part of the U.S. National Institutes of Health PROMIS Network. METHODS: Our multidisciplinary working group followed a comprehensive protocol for developing psychometrically robust patient-reported outcome measures including qualitative (scale development) and quantitative (psychometric evaluation) development. We performed an extensive literature review, conducted 16 focus groups with cancer patients and multiple discussions with clinicians, and evaluated candidate items in cognitive testing with patients. We administered items to 819 cancer patients. Items were calibrated using item-response theory and evaluated for reliability and validity. MAIN OUTCOME MEASURES: The PROMIS SexFS measures, version 1.0, include 81 items in 11 domains: Interest in Sexual Activity, Lubrication, Vaginal Discomfort, Erectile Function, Global Satisfaction with Sex Life, Orgasm, Anal Discomfort, Therapeutic Aids, Sexual Activities, Interfering Factors, and Screener Questions. RESULTS: In addition to content validity (patients indicate that items cover important aspects of their experiences) and face validity (patients indicate that items measure sexual function and satisfaction), the measure shows evidence for discriminant validity (domains discriminate between groups expected to be different) and convergent validity (strong correlations between scores on PROMIS and scores on conceptually similar older measures of sexual function), as well as favorable test-retest reliability among people not expected to change (interclass correlations from two administrations of the instrument, 1 month apart). CONCLUSIONS: The PROMIS SexFS offers researchers a reliable and valid set of tools to measure self-reported sexual function and satisfaction among diverse men and women. The measures are customizable; researchers can select the relevant domains and items comprising those domains for their study.

Authors
Flynn, KE; Lin, L; Cyranowski, JM; Reeve, BB; Reese, JB; Jeffery, DD; Smith, AW; Porter, LS; Dombeck, CB; Bruner, DW; Keefe, FJ; Weinfurt, KP
MLA Citation
Flynn, KE, Lin, L, Cyranowski, JM, Reeve, BB, Reese, JB, Jeffery, DD, Smith, AW, Porter, LS, Dombeck, CB, Bruner, DW, Keefe, FJ, and Weinfurt, KP. "Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer." J Sex Med 10 Suppl 1 (February 2013): 43-52.
PMID
23387911
Source
epmc
Published In
The Journal of Sexual Medicine
Volume
10 Suppl 1
Publish Date
2013
Start Page
43
End Page
52
DOI
10.1111/j.1743-6109.2012.02995.x

Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer.

INTRODUCTION: We describe the development and validation of the Patient-Reported Outcomes Measurement Information System(®) Sexual Function and Satisfaction (PROMIS(®) SexFS; National Institutes of Health) measures, version 1.0, for cancer populations. AIM: To develop a customizable self-report measure of sexual function and satisfaction as part of the U.S. National Institutes of Health PROMIS Network. METHODS: Our multidisciplinary working group followed a comprehensive protocol for developing psychometrically robust patient-reported outcome measures including qualitative (scale development) and quantitative (psychometric evaluation) development. We performed an extensive literature review, conducted 16 focus groups with cancer patients and multiple discussions with clinicians, and evaluated candidate items in cognitive testing with patients. We administered items to 819 cancer patients. Items were calibrated using item-response theory and evaluated for reliability and validity. MAIN OUTCOME MEASURES: The PROMIS SexFS measures, version 1.0, include 81 items in 11 domains: Interest in Sexual Activity, Lubrication, Vaginal Discomfort, Erectile Function, Global Satisfaction with Sex Life, Orgasm, Anal Discomfort, Therapeutic Aids, Sexual Activities, Interfering Factors, and Screener Questions. RESULTS: In addition to content validity (patients indicate that items cover important aspects of their experiences) and face validity (patients indicate that items measure sexual function and satisfaction), the measure shows evidence for discriminant validity (domains discriminate between groups expected to be different) and convergent validity (strong correlations between scores on PROMIS and scores on conceptually similar older measures of sexual function), as well as favorable test-retest reliability among people not expected to change (interclass correlations from two administrations of the instrument, 1 month apart). CONCLUSIONS: The PROMIS SexFS offers researchers a reliable and valid set of tools to measure self-reported sexual function and satisfaction among diverse men and women. The measures are customizable; researchers can select the relevant domains and items comprising those domains for their study.

Authors
Flynn, KE; Lin, L; Cyranowski, JM; Reeve, BB; Reese, JB; Jeffery, DD; Smith, AW; Porter, LS; Dombeck, CB; Bruner, DW; Keefe, FJ; Weinfurt, KP
MLA Citation
Flynn, KE, Lin, L, Cyranowski, JM, Reeve, BB, Reese, JB, Jeffery, DD, Smith, AW, Porter, LS, Dombeck, CB, Bruner, DW, Keefe, FJ, and Weinfurt, KP. "Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer." J Sex Med 10 Suppl 1 (February 2013): 43-52.
PMID
23387911
Source
epmc
Published In
The Journal of Sexual Medicine
Volume
10 Suppl 1
Publish Date
2013
Start Page
43
End Page
52
DOI
10.1111/j.1743-6109.2012.02995.x

Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer.

INTRODUCTION: We describe the development and validation of the Patient-Reported Outcomes Measurement Information System(®) Sexual Function and Satisfaction (PROMIS(®) SexFS; National Institutes of Health) measures, version 1.0, for cancer populations. AIM: To develop a customizable self-report measure of sexual function and satisfaction as part of the U.S. National Institutes of Health PROMIS Network. METHODS: Our multidisciplinary working group followed a comprehensive protocol for developing psychometrically robust patient-reported outcome measures including qualitative (scale development) and quantitative (psychometric evaluation) development. We performed an extensive literature review, conducted 16 focus groups with cancer patients and multiple discussions with clinicians, and evaluated candidate items in cognitive testing with patients. We administered items to 819 cancer patients. Items were calibrated using item-response theory and evaluated for reliability and validity. MAIN OUTCOME MEASURES: The PROMIS SexFS measures, version 1.0, include 81 items in 11 domains: Interest in Sexual Activity, Lubrication, Vaginal Discomfort, Erectile Function, Global Satisfaction with Sex Life, Orgasm, Anal Discomfort, Therapeutic Aids, Sexual Activities, Interfering Factors, and Screener Questions. RESULTS: In addition to content validity (patients indicate that items cover important aspects of their experiences) and face validity (patients indicate that items measure sexual function and satisfaction), the measure shows evidence for discriminant validity (domains discriminate between groups expected to be different) and convergent validity (strong correlations between scores on PROMIS and scores on conceptually similar older measures of sexual function), as well as favorable test-retest reliability among people not expected to change (interclass correlations from two administrations of the instrument, 1 month apart). CONCLUSIONS: The PROMIS SexFS offers researchers a reliable and valid set of tools to measure self-reported sexual function and satisfaction among diverse men and women. The measures are customizable; researchers can select the relevant domains and items comprising those domains for their study.

Authors
Flynn, KE; Lin, L; Cyranowski, JM; Reeve, BB; Reese, JB; Jeffery, DD; Smith, AW; Porter, LS; Dombeck, CB; Bruner, DW; Keefe, FJ; Weinfurt, KP
MLA Citation
Flynn, KE, Lin, L, Cyranowski, JM, Reeve, BB, Reese, JB, Jeffery, DD, Smith, AW, Porter, LS, Dombeck, CB, Bruner, DW, Keefe, FJ, and Weinfurt, KP. "Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer." J Sex Med 10 Suppl 1 (February 2013): 43-52.
PMID
23387911
Source
epmc
Published In
The Journal of Sexual Medicine
Volume
10 Suppl 1
Publish Date
2013
Start Page
43
End Page
52
DOI
10.1111/j.1743-6109.2012.02995.x

Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer.

INTRODUCTION: We describe the development and validation of the Patient-Reported Outcomes Measurement Information System(®) Sexual Function and Satisfaction (PROMIS(®) SexFS; National Institutes of Health) measures, version 1.0, for cancer populations. AIM: To develop a customizable self-report measure of sexual function and satisfaction as part of the U.S. National Institutes of Health PROMIS Network. METHODS: Our multidisciplinary working group followed a comprehensive protocol for developing psychometrically robust patient-reported outcome measures including qualitative (scale development) and quantitative (psychometric evaluation) development. We performed an extensive literature review, conducted 16 focus groups with cancer patients and multiple discussions with clinicians, and evaluated candidate items in cognitive testing with patients. We administered items to 819 cancer patients. Items were calibrated using item-response theory and evaluated for reliability and validity. MAIN OUTCOME MEASURES: The PROMIS SexFS measures, version 1.0, include 81 items in 11 domains: Interest in Sexual Activity, Lubrication, Vaginal Discomfort, Erectile Function, Global Satisfaction with Sex Life, Orgasm, Anal Discomfort, Therapeutic Aids, Sexual Activities, Interfering Factors, and Screener Questions. RESULTS: In addition to content validity (patients indicate that items cover important aspects of their experiences) and face validity (patients indicate that items measure sexual function and satisfaction), the measure shows evidence for discriminant validity (domains discriminate between groups expected to be different) and convergent validity (strong correlations between scores on PROMIS and scores on conceptually similar older measures of sexual function), as well as favorable test-retest reliability among people not expected to change (interclass correlations from two administrations of the instrument, 1 month apart). CONCLUSIONS: The PROMIS SexFS offers researchers a reliable and valid set of tools to measure self-reported sexual function and satisfaction among diverse men and women. The measures are customizable; researchers can select the relevant domains and items comprising those domains for their study.

Authors
Flynn, KE; Lin, L; Cyranowski, JM; Reeve, BB; Reese, JB; Jeffery, DD; Smith, AW; Porter, LS; Dombeck, CB; Bruner, DW; Keefe, FJ; Weinfurt, KP
MLA Citation
Flynn, KE, Lin, L, Cyranowski, JM, Reeve, BB, Reese, JB, Jeffery, DD, Smith, AW, Porter, LS, Dombeck, CB, Bruner, DW, Keefe, FJ, and Weinfurt, KP. "Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer." The journal of sexual medicine 10 Suppl 1 (February 2013): 43-52.
PMID
23387911
Source
epmc
Published In
The Journal of Sexual Medicine
Volume
10 Suppl 1
Publish Date
2013
Start Page
43
End Page
52
DOI
10.1111/j.1743-6109.2012.02995.x

Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer.

INTRODUCTION: We describe the development and validation of the Patient-Reported Outcomes Measurement Information System(®) Sexual Function and Satisfaction (PROMIS(®) SexFS; National Institutes of Health) measures, version 1.0, for cancer populations. AIM: To develop a customizable self-report measure of sexual function and satisfaction as part of the U.S. National Institutes of Health PROMIS Network. METHODS: Our multidisciplinary working group followed a comprehensive protocol for developing psychometrically robust patient-reported outcome measures including qualitative (scale development) and quantitative (psychometric evaluation) development. We performed an extensive literature review, conducted 16 focus groups with cancer patients and multiple discussions with clinicians, and evaluated candidate items in cognitive testing with patients. We administered items to 819 cancer patients. Items were calibrated using item-response theory and evaluated for reliability and validity. MAIN OUTCOME MEASURES: The PROMIS SexFS measures, version 1.0, include 81 items in 11 domains: Interest in Sexual Activity, Lubrication, Vaginal Discomfort, Erectile Function, Global Satisfaction with Sex Life, Orgasm, Anal Discomfort, Therapeutic Aids, Sexual Activities, Interfering Factors, and Screener Questions. RESULTS: In addition to content validity (patients indicate that items cover important aspects of their experiences) and face validity (patients indicate that items measure sexual function and satisfaction), the measure shows evidence for discriminant validity (domains discriminate between groups expected to be different) and convergent validity (strong correlations between scores on PROMIS and scores on conceptually similar older measures of sexual function), as well as favorable test-retest reliability among people not expected to change (interclass correlations from two administrations of the instrument, 1 month apart). CONCLUSIONS: The PROMIS SexFS offers researchers a reliable and valid set of tools to measure self-reported sexual function and satisfaction among diverse men and women. The measures are customizable; researchers can select the relevant domains and items comprising those domains for their study.

Authors
Flynn, KE; Lin, L; Cyranowski, JM; Reeve, BB; Reese, JB; Jeffery, DD; Smith, AW; Porter, LS; Dombeck, CB; Bruner, DW; Keefe, FJ; Weinfurt, KP
MLA Citation
Flynn, KE, Lin, L, Cyranowski, JM, Reeve, BB, Reese, JB, Jeffery, DD, Smith, AW, Porter, LS, Dombeck, CB, Bruner, DW, Keefe, FJ, and Weinfurt, KP. "Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer." The journal of sexual medicine 10 Suppl 1 (February 2013): 43-52.
PMID
23387911
Source
epmc
Published In
The Journal of Sexual Medicine
Volume
10 Suppl 1
Publish Date
2013
Start Page
43
End Page
52
DOI
10.1111/j.1743-6109.2012.02995.x

Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer.

INTRODUCTION: We describe the development and validation of the Patient-Reported Outcomes Measurement Information System(®) Sexual Function and Satisfaction (PROMIS(®) SexFS; National Institutes of Health) measures, version 1.0, for cancer populations. AIM: To develop a customizable self-report measure of sexual function and satisfaction as part of the U.S. National Institutes of Health PROMIS Network. METHODS: Our multidisciplinary working group followed a comprehensive protocol for developing psychometrically robust patient-reported outcome measures including qualitative (scale development) and quantitative (psychometric evaluation) development. We performed an extensive literature review, conducted 16 focus groups with cancer patients and multiple discussions with clinicians, and evaluated candidate items in cognitive testing with patients. We administered items to 819 cancer patients. Items were calibrated using item-response theory and evaluated for reliability and validity. MAIN OUTCOME MEASURES: The PROMIS SexFS measures, version 1.0, include 81 items in 11 domains: Interest in Sexual Activity, Lubrication, Vaginal Discomfort, Erectile Function, Global Satisfaction with Sex Life, Orgasm, Anal Discomfort, Therapeutic Aids, Sexual Activities, Interfering Factors, and Screener Questions. RESULTS: In addition to content validity (patients indicate that items cover important aspects of their experiences) and face validity (patients indicate that items measure sexual function and satisfaction), the measure shows evidence for discriminant validity (domains discriminate between groups expected to be different) and convergent validity (strong correlations between scores on PROMIS and scores on conceptually similar older measures of sexual function), as well as favorable test-retest reliability among people not expected to change (interclass correlations from two administrations of the instrument, 1 month apart). CONCLUSIONS: The PROMIS SexFS offers researchers a reliable and valid set of tools to measure self-reported sexual function and satisfaction among diverse men and women. The measures are customizable; researchers can select the relevant domains and items comprising those domains for their study.

Authors
Flynn, KE; Lin, L; Cyranowski, JM; Reeve, BB; Reese, JB; Jeffery, DD; Smith, AW; Porter, LS; Dombeck, CB; Bruner, DW; Keefe, FJ; Weinfurt, KP
MLA Citation
Flynn, KE, Lin, L, Cyranowski, JM, Reeve, BB, Reese, JB, Jeffery, DD, Smith, AW, Porter, LS, Dombeck, CB, Bruner, DW, Keefe, FJ, and Weinfurt, KP. "Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer." The journal of sexual medicine 10 Suppl 1 (February 2013): 43-52.
PMID
23387911
Source
epmc
Published In
The Journal of Sexual Medicine
Volume
10 Suppl 1
Publish Date
2013
Start Page
43
End Page
52
DOI
10.1111/j.1743-6109.2012.02995.x

Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer.

INTRODUCTION: We describe the development and validation of the Patient-Reported Outcomes Measurement Information System(®) Sexual Function and Satisfaction (PROMIS(®) SexFS; National Institutes of Health) measures, version 1.0, for cancer populations. AIM: To develop a customizable self-report measure of sexual function and satisfaction as part of the U.S. National Institutes of Health PROMIS Network. METHODS: Our multidisciplinary working group followed a comprehensive protocol for developing psychometrically robust patient-reported outcome measures including qualitative (scale development) and quantitative (psychometric evaluation) development. We performed an extensive literature review, conducted 16 focus groups with cancer patients and multiple discussions with clinicians, and evaluated candidate items in cognitive testing with patients. We administered items to 819 cancer patients. Items were calibrated using item-response theory and evaluated for reliability and validity. MAIN OUTCOME MEASURES: The PROMIS SexFS measures, version 1.0, include 81 items in 11 domains: Interest in Sexual Activity, Lubrication, Vaginal Discomfort, Erectile Function, Global Satisfaction with Sex Life, Orgasm, Anal Discomfort, Therapeutic Aids, Sexual Activities, Interfering Factors, and Screener Questions. RESULTS: In addition to content validity (patients indicate that items cover important aspects of their experiences) and face validity (patients indicate that items measure sexual function and satisfaction), the measure shows evidence for discriminant validity (domains discriminate between groups expected to be different) and convergent validity (strong correlations between scores on PROMIS and scores on conceptually similar older measures of sexual function), as well as favorable test-retest reliability among people not expected to change (interclass correlations from two administrations of the instrument, 1 month apart). CONCLUSIONS: The PROMIS SexFS offers researchers a reliable and valid set of tools to measure self-reported sexual function and satisfaction among diverse men and women. The measures are customizable; researchers can select the relevant domains and items comprising those domains for their study.

Authors
Flynn, KE; Lin, L; Cyranowski, JM; Reeve, BB; Reese, JB; Jeffery, DD; Smith, AW; Porter, LS; Dombeck, CB; Bruner, DW; Keefe, FJ; Weinfurt, KP
MLA Citation
Flynn, KE, Lin, L, Cyranowski, JM, Reeve, BB, Reese, JB, Jeffery, DD, Smith, AW, Porter, LS, Dombeck, CB, Bruner, DW, Keefe, FJ, and Weinfurt, KP. "Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer." The journal of sexual medicine 10 Suppl 1 (February 2013): 43-52.
PMID
23387911
Source
epmc
Published In
The Journal of Sexual Medicine
Volume
10 Suppl 1
Publish Date
2013
Start Page
43
End Page
52
DOI
10.1111/j.1743-6109.2012.02995.x

Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer.

INTRODUCTION: We describe the development and validation of the Patient-Reported Outcomes Measurement Information System(®) Sexual Function and Satisfaction (PROMIS(®) SexFS; National Institutes of Health) measures, version 1.0, for cancer populations. AIM: To develop a customizable self-report measure of sexual function and satisfaction as part of the U.S. National Institutes of Health PROMIS Network. METHODS: Our multidisciplinary working group followed a comprehensive protocol for developing psychometrically robust patient-reported outcome measures including qualitative (scale development) and quantitative (psychometric evaluation) development. We performed an extensive literature review, conducted 16 focus groups with cancer patients and multiple discussions with clinicians, and evaluated candidate items in cognitive testing with patients. We administered items to 819 cancer patients. Items were calibrated using item-response theory and evaluated for reliability and validity. MAIN OUTCOME MEASURES: The PROMIS SexFS measures, version 1.0, include 81 items in 11 domains: Interest in Sexual Activity, Lubrication, Vaginal Discomfort, Erectile Function, Global Satisfaction with Sex Life, Orgasm, Anal Discomfort, Therapeutic Aids, Sexual Activities, Interfering Factors, and Screener Questions. RESULTS: In addition to content validity (patients indicate that items cover important aspects of their experiences) and face validity (patients indicate that items measure sexual function and satisfaction), the measure shows evidence for discriminant validity (domains discriminate between groups expected to be different) and convergent validity (strong correlations between scores on PROMIS and scores on conceptually similar older measures of sexual function), as well as favorable test-retest reliability among people not expected to change (interclass correlations from two administrations of the instrument, 1 month apart). CONCLUSIONS: The PROMIS SexFS offers researchers a reliable and valid set of tools to measure self-reported sexual function and satisfaction among diverse men and women. The measures are customizable; researchers can select the relevant domains and items comprising those domains for their study.

Authors
Flynn, KE; Lin, L; Cyranowski, JM; Reeve, BB; Reese, JB; Jeffery, DD; Smith, AW; Porter, LS; Dombeck, CB; Bruner, DW; Keefe, FJ; Weinfurt, KP
MLA Citation
Flynn, KE, Lin, L, Cyranowski, JM, Reeve, BB, Reese, JB, Jeffery, DD, Smith, AW, Porter, LS, Dombeck, CB, Bruner, DW, Keefe, FJ, and Weinfurt, KP. "Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer." J Sex Med 10 Suppl 1 (February 2013): 43-52.
PMID
23387911
Source
pubmed
Published In
The Journal of Sexual Medicine
Volume
10 Suppl 1
Publish Date
2013
Start Page
43
End Page
52
DOI
10.1111/j.1743-6109.2012.02995.x

Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer.

INTRODUCTION: We describe the development and validation of the Patient-Reported Outcomes Measurement Information System(®) Sexual Function and Satisfaction (PROMIS(®) SexFS; National Institutes of Health) measures, version 1.0, for cancer populations. AIM: To develop a customizable self-report measure of sexual function and satisfaction as part of the U.S. National Institutes of Health PROMIS Network. METHODS: Our multidisciplinary working group followed a comprehensive protocol for developing psychometrically robust patient-reported outcome measures including qualitative (scale development) and quantitative (psychometric evaluation) development. We performed an extensive literature review, conducted 16 focus groups with cancer patients and multiple discussions with clinicians, and evaluated candidate items in cognitive testing with patients. We administered items to 819 cancer patients. Items were calibrated using item-response theory and evaluated for reliability and validity. MAIN OUTCOME MEASURES: The PROMIS SexFS measures, version 1.0, include 81 items in 11 domains: Interest in Sexual Activity, Lubrication, Vaginal Discomfort, Erectile Function, Global Satisfaction with Sex Life, Orgasm, Anal Discomfort, Therapeutic Aids, Sexual Activities, Interfering Factors, and Screener Questions. RESULTS: In addition to content validity (patients indicate that items cover important aspects of their experiences) and face validity (patients indicate that items measure sexual function and satisfaction), the measure shows evidence for discriminant validity (domains discriminate between groups expected to be different) and convergent validity (strong correlations between scores on PROMIS and scores on conceptually similar older measures of sexual function), as well as favorable test-retest reliability among people not expected to change (interclass correlations from two administrations of the instrument, 1 month apart). CONCLUSIONS: The PROMIS SexFS offers researchers a reliable and valid set of tools to measure self-reported sexual function and satisfaction among diverse men and women. The measures are customizable; researchers can select the relevant domains and items comprising those domains for their study.

Authors
Flynn, KE; Lin, L; Cyranowski, JM; Reeve, BB; Reese, JB; Jeffery, DD; Smith, AW; Porter, LS; Dombeck, CB; Bruner, DW; Keefe, FJ; Weinfurt, KP
MLA Citation
Flynn, KE, Lin, L, Cyranowski, JM, Reeve, BB, Reese, JB, Jeffery, DD, Smith, AW, Porter, LS, Dombeck, CB, Bruner, DW, Keefe, FJ, and Weinfurt, KP. "Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer." J Sex Med 10 Suppl 1 (February 2013): 43-52.
PMID
23387911
Source
pubmed
Published In
The Journal of Sexual Medicine
Volume
10 Suppl 1
Publish Date
2013
Start Page
43
End Page
52
DOI
10.1111/j.1743-6109.2012.02995.x

Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer.

INTRODUCTION: We describe the development and validation of the Patient-Reported Outcomes Measurement Information System(®) Sexual Function and Satisfaction (PROMIS(®) SexFS; National Institutes of Health) measures, version 1.0, for cancer populations. AIM: To develop a customizable self-report measure of sexual function and satisfaction as part of the U.S. National Institutes of Health PROMIS Network. METHODS: Our multidisciplinary working group followed a comprehensive protocol for developing psychometrically robust patient-reported outcome measures including qualitative (scale development) and quantitative (psychometric evaluation) development. We performed an extensive literature review, conducted 16 focus groups with cancer patients and multiple discussions with clinicians, and evaluated candidate items in cognitive testing with patients. We administered items to 819 cancer patients. Items were calibrated using item-response theory and evaluated for reliability and validity. MAIN OUTCOME MEASURES: The PROMIS SexFS measures, version 1.0, include 81 items in 11 domains: Interest in Sexual Activity, Lubrication, Vaginal Discomfort, Erectile Function, Global Satisfaction with Sex Life, Orgasm, Anal Discomfort, Therapeutic Aids, Sexual Activities, Interfering Factors, and Screener Questions. RESULTS: In addition to content validity (patients indicate that items cover important aspects of their experiences) and face validity (patients indicate that items measure sexual function and satisfaction), the measure shows evidence for discriminant validity (domains discriminate between groups expected to be different) and convergent validity (strong correlations between scores on PROMIS and scores on conceptually similar older measures of sexual function), as well as favorable test-retest reliability among people not expected to change (interclass correlations from two administrations of the instrument, 1 month apart). CONCLUSIONS: The PROMIS SexFS offers researchers a reliable and valid set of tools to measure self-reported sexual function and satisfaction among diverse men and women. The measures are customizable; researchers can select the relevant domains and items comprising those domains for their study.

Authors
Flynn, KE; Lin, L; Cyranowski, JM; Reeve, BB; Reese, JB; Jeffery, DD; Smith, AW; Porter, LS; Dombeck, CB; Bruner, DW; Keefe, FJ; Weinfurt, KP
MLA Citation
Flynn, KE, Lin, L, Cyranowski, JM, Reeve, BB, Reese, JB, Jeffery, DD, Smith, AW, Porter, LS, Dombeck, CB, Bruner, DW, Keefe, FJ, and Weinfurt, KP. "Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer." J Sex Med 10 Suppl 1 (February 2013): 43-52.
PMID
23387911
Source
pubmed
Published In
The Journal of Sexual Medicine
Volume
10 Suppl 1
Publish Date
2013
Start Page
43
End Page
52
DOI
10.1111/j.1743-6109.2012.02995.x

Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer.

INTRODUCTION: We describe the development and validation of the Patient-Reported Outcomes Measurement Information System(®) Sexual Function and Satisfaction (PROMIS(®) SexFS; National Institutes of Health) measures, version 1.0, for cancer populations. AIM: To develop a customizable self-report measure of sexual function and satisfaction as part of the U.S. National Institutes of Health PROMIS Network. METHODS: Our multidisciplinary working group followed a comprehensive protocol for developing psychometrically robust patient-reported outcome measures including qualitative (scale development) and quantitative (psychometric evaluation) development. We performed an extensive literature review, conducted 16 focus groups with cancer patients and multiple discussions with clinicians, and evaluated candidate items in cognitive testing with patients. We administered items to 819 cancer patients. Items were calibrated using item-response theory and evaluated for reliability and validity. MAIN OUTCOME MEASURES: The PROMIS SexFS measures, version 1.0, include 81 items in 11 domains: Interest in Sexual Activity, Lubrication, Vaginal Discomfort, Erectile Function, Global Satisfaction with Sex Life, Orgasm, Anal Discomfort, Therapeutic Aids, Sexual Activities, Interfering Factors, and Screener Questions. RESULTS: In addition to content validity (patients indicate that items cover important aspects of their experiences) and face validity (patients indicate that items measure sexual function and satisfaction), the measure shows evidence for discriminant validity (domains discriminate between groups expected to be different) and convergent validity (strong correlations between scores on PROMIS and scores on conceptually similar older measures of sexual function), as well as favorable test-retest reliability among people not expected to change (interclass correlations from two administrations of the instrument, 1 month apart). CONCLUSIONS: The PROMIS SexFS offers researchers a reliable and valid set of tools to measure self-reported sexual function and satisfaction among diverse men and women. The measures are customizable; researchers can select the relevant domains and items comprising those domains for their study.

Authors
Flynn, KE; Lin, L; Cyranowski, JM; Reeve, BB; Reese, JB; Jeffery, DD; Smith, AW; Porter, LS; Dombeck, CB; Bruner, DW; Keefe, FJ; Weinfurt, KP
MLA Citation
Flynn, KE, Lin, L, Cyranowski, JM, Reeve, BB, Reese, JB, Jeffery, DD, Smith, AW, Porter, LS, Dombeck, CB, Bruner, DW, Keefe, FJ, and Weinfurt, KP. "Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer." J Sex Med 10 Suppl 1 (February 2013): 43-52.
PMID
23387911
Source
pubmed
Published In
The Journal of Sexual Medicine
Volume
10 Suppl 1
Publish Date
2013
Start Page
43
End Page
52
DOI
10.1111/j.1743-6109.2012.02995.x

Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer.

INTRODUCTION: We describe the development and validation of the Patient-Reported Outcomes Measurement Information System(®) Sexual Function and Satisfaction (PROMIS(®) SexFS; National Institutes of Health) measures, version 1.0, for cancer populations. AIM: To develop a customizable self-report measure of sexual function and satisfaction as part of the U.S. National Institutes of Health PROMIS Network. METHODS: Our multidisciplinary working group followed a comprehensive protocol for developing psychometrically robust patient-reported outcome measures including qualitative (scale development) and quantitative (psychometric evaluation) development. We performed an extensive literature review, conducted 16 focus groups with cancer patients and multiple discussions with clinicians, and evaluated candidate items in cognitive testing with patients. We administered items to 819 cancer patients. Items were calibrated using item-response theory and evaluated for reliability and validity. MAIN OUTCOME MEASURES: The PROMIS SexFS measures, version 1.0, include 81 items in 11 domains: Interest in Sexual Activity, Lubrication, Vaginal Discomfort, Erectile Function, Global Satisfaction with Sex Life, Orgasm, Anal Discomfort, Therapeutic Aids, Sexual Activities, Interfering Factors, and Screener Questions. RESULTS: In addition to content validity (patients indicate that items cover important aspects of their experiences) and face validity (patients indicate that items measure sexual function and satisfaction), the measure shows evidence for discriminant validity (domains discriminate between groups expected to be different) and convergent validity (strong correlations between scores on PROMIS and scores on conceptually similar older measures of sexual function), as well as favorable test-retest reliability among people not expected to change (interclass correlations from two administrations of the instrument, 1 month apart). CONCLUSIONS: The PROMIS SexFS offers researchers a reliable and valid set of tools to measure self-reported sexual function and satisfaction among diverse men and women. The measures are customizable; researchers can select the relevant domains and items comprising those domains for their study.

Authors
Flynn, KE; Lin, L; Cyranowski, JM; Reeve, BB; Reese, JB; Jeffery, DD; Smith, AW; Porter, LS; Dombeck, CB; Bruner, DW; Keefe, FJ; Weinfurt, KP
MLA Citation
Flynn, KE, Lin, L, Cyranowski, JM, Reeve, BB, Reese, JB, Jeffery, DD, Smith, AW, Porter, LS, Dombeck, CB, Bruner, DW, Keefe, FJ, and Weinfurt, KP. "Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer." The journal of sexual medicine 10 Suppl 1 (February 2013): 43-52.
PMID
23387911
Source
pubmed
Published In
The Journal of Sexual Medicine
Volume
10 Suppl 1
Publish Date
2013
Start Page
43
End Page
52
DOI
10.1111/j.1743-6109.2012.02995.x

Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer.

INTRODUCTION: We describe the development and validation of the Patient-Reported Outcomes Measurement Information System(®) Sexual Function and Satisfaction (PROMIS(®) SexFS; National Institutes of Health) measures, version 1.0, for cancer populations. AIM: To develop a customizable self-report measure of sexual function and satisfaction as part of the U.S. National Institutes of Health PROMIS Network. METHODS: Our multidisciplinary working group followed a comprehensive protocol for developing psychometrically robust patient-reported outcome measures including qualitative (scale development) and quantitative (psychometric evaluation) development. We performed an extensive literature review, conducted 16 focus groups with cancer patients and multiple discussions with clinicians, and evaluated candidate items in cognitive testing with patients. We administered items to 819 cancer patients. Items were calibrated using item-response theory and evaluated for reliability and validity. MAIN OUTCOME MEASURES: The PROMIS SexFS measures, version 1.0, include 81 items in 11 domains: Interest in Sexual Activity, Lubrication, Vaginal Discomfort, Erectile Function, Global Satisfaction with Sex Life, Orgasm, Anal Discomfort, Therapeutic Aids, Sexual Activities, Interfering Factors, and Screener Questions. RESULTS: In addition to content validity (patients indicate that items cover important aspects of their experiences) and face validity (patients indicate that items measure sexual function and satisfaction), the measure shows evidence for discriminant validity (domains discriminate between groups expected to be different) and convergent validity (strong correlations between scores on PROMIS and scores on conceptually similar older measures of sexual function), as well as favorable test-retest reliability among people not expected to change (interclass correlations from two administrations of the instrument, 1 month apart). CONCLUSIONS: The PROMIS SexFS offers researchers a reliable and valid set of tools to measure self-reported sexual function and satisfaction among diverse men and women. The measures are customizable; researchers can select the relevant domains and items comprising those domains for their study.

Authors
Flynn, KE; Lin, L; Cyranowski, JM; Reeve, BB; Reese, JB; Jeffery, DD; Smith, AW; Porter, LS; Dombeck, CB; Bruner, DW; Keefe, FJ; Weinfurt, KP
MLA Citation
Flynn, KE, Lin, L, Cyranowski, JM, Reeve, BB, Reese, JB, Jeffery, DD, Smith, AW, Porter, LS, Dombeck, CB, Bruner, DW, Keefe, FJ, and Weinfurt, KP. "Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer." The journal of sexual medicine 10 Suppl 1 (February 2013): 43-52.
PMID
23387911
Source
pubmed
Published In
The Journal of Sexual Medicine
Volume
10 Suppl 1
Publish Date
2013
Start Page
43
End Page
52
DOI
10.1111/j.1743-6109.2012.02995.x

Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer.

INTRODUCTION: We describe the development and validation of the Patient-Reported Outcomes Measurement Information System(®) Sexual Function and Satisfaction (PROMIS(®) SexFS; National Institutes of Health) measures, version 1.0, for cancer populations. AIM: To develop a customizable self-report measure of sexual function and satisfaction as part of the U.S. National Institutes of Health PROMIS Network. METHODS: Our multidisciplinary working group followed a comprehensive protocol for developing psychometrically robust patient-reported outcome measures including qualitative (scale development) and quantitative (psychometric evaluation) development. We performed an extensive literature review, conducted 16 focus groups with cancer patients and multiple discussions with clinicians, and evaluated candidate items in cognitive testing with patients. We administered items to 819 cancer patients. Items were calibrated using item-response theory and evaluated for reliability and validity. MAIN OUTCOME MEASURES: The PROMIS SexFS measures, version 1.0, include 81 items in 11 domains: Interest in Sexual Activity, Lubrication, Vaginal Discomfort, Erectile Function, Global Satisfaction with Sex Life, Orgasm, Anal Discomfort, Therapeutic Aids, Sexual Activities, Interfering Factors, and Screener Questions. RESULTS: In addition to content validity (patients indicate that items cover important aspects of their experiences) and face validity (patients indicate that items measure sexual function and satisfaction), the measure shows evidence for discriminant validity (domains discriminate between groups expected to be different) and convergent validity (strong correlations between scores on PROMIS and scores on conceptually similar older measures of sexual function), as well as favorable test-retest reliability among people not expected to change (interclass correlations from two administrations of the instrument, 1 month apart). CONCLUSIONS: The PROMIS SexFS offers researchers a reliable and valid set of tools to measure self-reported sexual function and satisfaction among diverse men and women. The measures are customizable; researchers can select the relevant domains and items comprising those domains for their study.

Authors
Flynn, KE; Lin, L; Cyranowski, JM; Reeve, BB; Reese, JB; Jeffery, DD; Smith, AW; Porter, LS; Dombeck, CB; Bruner, DW; Keefe, FJ; Weinfurt, KP
MLA Citation
Flynn, KE, Lin, L, Cyranowski, JM, Reeve, BB, Reese, JB, Jeffery, DD, Smith, AW, Porter, LS, Dombeck, CB, Bruner, DW, Keefe, FJ, and Weinfurt, KP. "Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer." The journal of sexual medicine 10 Suppl 1 (February 2013): 43-52.
PMID
23387911
Source
pubmed
Published In
The Journal of Sexual Medicine
Volume
10 Suppl 1
Publish Date
2013
Start Page
43
End Page
52
DOI
10.1111/j.1743-6109.2012.02995.x

Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer.

INTRODUCTION: We describe the development and validation of the Patient-Reported Outcomes Measurement Information System(®) Sexual Function and Satisfaction (PROMIS(®) SexFS; National Institutes of Health) measures, version 1.0, for cancer populations. AIM: To develop a customizable self-report measure of sexual function and satisfaction as part of the U.S. National Institutes of Health PROMIS Network. METHODS: Our multidisciplinary working group followed a comprehensive protocol for developing psychometrically robust patient-reported outcome measures including qualitative (scale development) and quantitative (psychometric evaluation) development. We performed an extensive literature review, conducted 16 focus groups with cancer patients and multiple discussions with clinicians, and evaluated candidate items in cognitive testing with patients. We administered items to 819 cancer patients. Items were calibrated using item-response theory and evaluated for reliability and validity. MAIN OUTCOME MEASURES: The PROMIS SexFS measures, version 1.0, include 81 items in 11 domains: Interest in Sexual Activity, Lubrication, Vaginal Discomfort, Erectile Function, Global Satisfaction with Sex Life, Orgasm, Anal Discomfort, Therapeutic Aids, Sexual Activities, Interfering Factors, and Screener Questions. RESULTS: In addition to content validity (patients indicate that items cover important aspects of their experiences) and face validity (patients indicate that items measure sexual function and satisfaction), the measure shows evidence for discriminant validity (domains discriminate between groups expected to be different) and convergent validity (strong correlations between scores on PROMIS and scores on conceptually similar older measures of sexual function), as well as favorable test-retest reliability among people not expected to change (interclass correlations from two administrations of the instrument, 1 month apart). CONCLUSIONS: The PROMIS SexFS offers researchers a reliable and valid set of tools to measure self-reported sexual function and satisfaction among diverse men and women. The measures are customizable; researchers can select the relevant domains and items comprising those domains for their study.

Authors
Flynn, KE; Lin, L; Cyranowski, JM; Reeve, BB; Reese, JB; Jeffery, DD; Smith, AW; Porter, LS; Dombeck, CB; Bruner, DW; Keefe, FJ; Weinfurt, KP
MLA Citation
Flynn, KE, Lin, L, Cyranowski, JM, Reeve, BB, Reese, JB, Jeffery, DD, Smith, AW, Porter, LS, Dombeck, CB, Bruner, DW, Keefe, FJ, and Weinfurt, KP. "Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer." The journal of sexual medicine 10 Suppl 1 (February 2013): 43-52.
PMID
23387911
Source
pubmed
Published In
The Journal of Sexual Medicine
Volume
10 Suppl 1
Publish Date
2013
Start Page
43
End Page
52
DOI
10.1111/j.1743-6109.2012.02995.x

Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer.

INTRODUCTION: We describe the development and validation of the Patient-Reported Outcomes Measurement Information System(®) Sexual Function and Satisfaction (PROMIS(®) SexFS; National Institutes of Health) measures, version 1.0, for cancer populations. AIM: To develop a customizable self-report measure of sexual function and satisfaction as part of the U.S. National Institutes of Health PROMIS Network. METHODS: Our multidisciplinary working group followed a comprehensive protocol for developing psychometrically robust patient-reported outcome measures including qualitative (scale development) and quantitative (psychometric evaluation) development. We performed an extensive literature review, conducted 16 focus groups with cancer patients and multiple discussions with clinicians, and evaluated candidate items in cognitive testing with patients. We administered items to 819 cancer patients. Items were calibrated using item-response theory and evaluated for reliability and validity. MAIN OUTCOME MEASURES: The PROMIS SexFS measures, version 1.0, include 81 items in 11 domains: Interest in Sexual Activity, Lubrication, Vaginal Discomfort, Erectile Function, Global Satisfaction with Sex Life, Orgasm, Anal Discomfort, Therapeutic Aids, Sexual Activities, Interfering Factors, and Screener Questions. RESULTS: In addition to content validity (patients indicate that items cover important aspects of their experiences) and face validity (patients indicate that items measure sexual function and satisfaction), the measure shows evidence for discriminant validity (domains discriminate between groups expected to be different) and convergent validity (strong correlations between scores on PROMIS and scores on conceptually similar older measures of sexual function), as well as favorable test-retest reliability among people not expected to change (interclass correlations from two administrations of the instrument, 1 month apart). CONCLUSIONS: The PROMIS SexFS offers researchers a reliable and valid set of tools to measure self-reported sexual function and satisfaction among diverse men and women. The measures are customizable; researchers can select the relevant domains and items comprising those domains for their study.

Authors
Flynn, KE; Lin, L; Cyranowski, JM; Reeve, BB; Reese, JB; Jeffery, DD; Smith, AW; Porter, LS; Dombeck, CB; Bruner, DW; Keefe, FJ; Weinfurt, KP
MLA Citation
Flynn, KE, Lin, L, Cyranowski, JM, Reeve, BB, Reese, JB, Jeffery, DD, Smith, AW, Porter, LS, Dombeck, CB, Bruner, DW, Keefe, FJ, and Weinfurt, KP. "Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer." J Sex Med 10 Suppl 1 (February 2013): 43-52.
PMID
23387911
Source
pubmed
Published In
The Journal of Sexual Medicine
Volume
10 Suppl 1
Publish Date
2013
Start Page
43
End Page
52
DOI
10.1111/j.1743-6109.2012.02995.x

Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer.

INTRODUCTION: We describe the development and validation of the Patient-Reported Outcomes Measurement Information System(®) Sexual Function and Satisfaction (PROMIS(®) SexFS; National Institutes of Health) measures, version 1.0, for cancer populations. AIM: To develop a customizable self-report measure of sexual function and satisfaction as part of the U.S. National Institutes of Health PROMIS Network. METHODS: Our multidisciplinary working group followed a comprehensive protocol for developing psychometrically robust patient-reported outcome measures including qualitative (scale development) and quantitative (psychometric evaluation) development. We performed an extensive literature review, conducted 16 focus groups with cancer patients and multiple discussions with clinicians, and evaluated candidate items in cognitive testing with patients. We administered items to 819 cancer patients. Items were calibrated using item-response theory and evaluated for reliability and validity. MAIN OUTCOME MEASURES: The PROMIS SexFS measures, version 1.0, include 81 items in 11 domains: Interest in Sexual Activity, Lubrication, Vaginal Discomfort, Erectile Function, Global Satisfaction with Sex Life, Orgasm, Anal Discomfort, Therapeutic Aids, Sexual Activities, Interfering Factors, and Screener Questions. RESULTS: In addition to content validity (patients indicate that items cover important aspects of their experiences) and face validity (patients indicate that items measure sexual function and satisfaction), the measure shows evidence for discriminant validity (domains discriminate between groups expected to be different) and convergent validity (strong correlations between scores on PROMIS and scores on conceptually similar older measures of sexual function), as well as favorable test-retest reliability among people not expected to change (interclass correlations from two administrations of the instrument, 1 month apart). CONCLUSIONS: The PROMIS SexFS offers researchers a reliable and valid set of tools to measure self-reported sexual function and satisfaction among diverse men and women. The measures are customizable; researchers can select the relevant domains and items comprising those domains for their study.

Authors
Flynn, KE; Lin, L; Cyranowski, JM; Reeve, BB; Reese, JB; Jeffery, DD; Smith, AW; Porter, LS; Dombeck, CB; Bruner, DW; Keefe, FJ; Weinfurt, KP
MLA Citation
Flynn, KE, Lin, L, Cyranowski, JM, Reeve, BB, Reese, JB, Jeffery, DD, Smith, AW, Porter, LS, Dombeck, CB, Bruner, DW, Keefe, FJ, and Weinfurt, KP. "Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer." J Sex Med 10 Suppl 1 (February 2013): 43-52.
PMID
23387911
Source
pubmed
Published In
The Journal of Sexual Medicine
Volume
10 Suppl 1
Publish Date
2013
Start Page
43
End Page
52
DOI
10.1111/j.1743-6109.2012.02995.x

Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer.

INTRODUCTION: We describe the development and validation of the Patient-Reported Outcomes Measurement Information System(®) Sexual Function and Satisfaction (PROMIS(®) SexFS; National Institutes of Health) measures, version 1.0, for cancer populations. AIM: To develop a customizable self-report measure of sexual function and satisfaction as part of the U.S. National Institutes of Health PROMIS Network. METHODS: Our multidisciplinary working group followed a comprehensive protocol for developing psychometrically robust patient-reported outcome measures including qualitative (scale development) and quantitative (psychometric evaluation) development. We performed an extensive literature review, conducted 16 focus groups with cancer patients and multiple discussions with clinicians, and evaluated candidate items in cognitive testing with patients. We administered items to 819 cancer patients. Items were calibrated using item-response theory and evaluated for reliability and validity. MAIN OUTCOME MEASURES: The PROMIS SexFS measures, version 1.0, include 81 items in 11 domains: Interest in Sexual Activity, Lubrication, Vaginal Discomfort, Erectile Function, Global Satisfaction with Sex Life, Orgasm, Anal Discomfort, Therapeutic Aids, Sexual Activities, Interfering Factors, and Screener Questions. RESULTS: In addition to content validity (patients indicate that items cover important aspects of their experiences) and face validity (patients indicate that items measure sexual function and satisfaction), the measure shows evidence for discriminant validity (domains discriminate between groups expected to be different) and convergent validity (strong correlations between scores on PROMIS and scores on conceptually similar older measures of sexual function), as well as favorable test-retest reliability among people not expected to change (interclass correlations from two administrations of the instrument, 1 month apart). CONCLUSIONS: The PROMIS SexFS offers researchers a reliable and valid set of tools to measure self-reported sexual function and satisfaction among diverse men and women. The measures are customizable; researchers can select the relevant domains and items comprising those domains for their study.

Authors
Flynn, KE; Lin, L; Cyranowski, JM; Reeve, BB; Reese, JB; Jeffery, DD; Smith, AW; Porter, LS; Dombeck, CB; Bruner, DW; Keefe, FJ; Weinfurt, KP
MLA Citation
Flynn, KE, Lin, L, Cyranowski, JM, Reeve, BB, Reese, JB, Jeffery, DD, Smith, AW, Porter, LS, Dombeck, CB, Bruner, DW, Keefe, FJ, and Weinfurt, KP. "Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer." J Sex Med 10 Suppl 1 (February 2013): 43-52.
PMID
23387911
Source
pubmed
Published In
The Journal of Sexual Medicine
Volume
10 Suppl 1
Publish Date
2013
Start Page
43
End Page
52
DOI
10.1111/j.1743-6109.2012.02995.x

Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer.

INTRODUCTION: We describe the development and validation of the Patient-Reported Outcomes Measurement Information System(®) Sexual Function and Satisfaction (PROMIS(®) SexFS; National Institutes of Health) measures, version 1.0, for cancer populations. AIM: To develop a customizable self-report measure of sexual function and satisfaction as part of the U.S. National Institutes of Health PROMIS Network. METHODS: Our multidisciplinary working group followed a comprehensive protocol for developing psychometrically robust patient-reported outcome measures including qualitative (scale development) and quantitative (psychometric evaluation) development. We performed an extensive literature review, conducted 16 focus groups with cancer patients and multiple discussions with clinicians, and evaluated candidate items in cognitive testing with patients. We administered items to 819 cancer patients. Items were calibrated using item-response theory and evaluated for reliability and validity. MAIN OUTCOME MEASURES: The PROMIS SexFS measures, version 1.0, include 81 items in 11 domains: Interest in Sexual Activity, Lubrication, Vaginal Discomfort, Erectile Function, Global Satisfaction with Sex Life, Orgasm, Anal Discomfort, Therapeutic Aids, Sexual Activities, Interfering Factors, and Screener Questions. RESULTS: In addition to content validity (patients indicate that items cover important aspects of their experiences) and face validity (patients indicate that items measure sexual function and satisfaction), the measure shows evidence for discriminant validity (domains discriminate between groups expected to be different) and convergent validity (strong correlations between scores on PROMIS and scores on conceptually similar older measures of sexual function), as well as favorable test-retest reliability among people not expected to change (interclass correlations from two administrations of the instrument, 1 month apart). CONCLUSIONS: The PROMIS SexFS offers researchers a reliable and valid set of tools to measure self-reported sexual function and satisfaction among diverse men and women. The measures are customizable; researchers can select the relevant domains and items comprising those domains for their study.

Authors
Flynn, KE; Lin, L; Cyranowski, JM; Reeve, BB; Reese, JB; Jeffery, DD; Smith, AW; Porter, LS; Dombeck, CB; Bruner, DW; Keefe, FJ; Weinfurt, KP
MLA Citation
Flynn, KE, Lin, L, Cyranowski, JM, Reeve, BB, Reese, JB, Jeffery, DD, Smith, AW, Porter, LS, Dombeck, CB, Bruner, DW, Keefe, FJ, and Weinfurt, KP. "Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer." J Sex Med 10 Suppl 1 (February 2013): 43-52.
PMID
23387911
Source
pubmed
Published In
The Journal of Sexual Medicine
Volume
10 Suppl 1
Publish Date
2013
Start Page
43
End Page
52
DOI
10.1111/j.1743-6109.2012.02995.x

Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer.

INTRODUCTION: We describe the development and validation of the Patient-Reported Outcomes Measurement Information System(®) Sexual Function and Satisfaction (PROMIS(®) SexFS; National Institutes of Health) measures, version 1.0, for cancer populations. AIM: To develop a customizable self-report measure of sexual function and satisfaction as part of the U.S. National Institutes of Health PROMIS Network. METHODS: Our multidisciplinary working group followed a comprehensive protocol for developing psychometrically robust patient-reported outcome measures including qualitative (scale development) and quantitative (psychometric evaluation) development. We performed an extensive literature review, conducted 16 focus groups with cancer patients and multiple discussions with clinicians, and evaluated candidate items in cognitive testing with patients. We administered items to 819 cancer patients. Items were calibrated using item-response theory and evaluated for reliability and validity. MAIN OUTCOME MEASURES: The PROMIS SexFS measures, version 1.0, include 81 items in 11 domains: Interest in Sexual Activity, Lubrication, Vaginal Discomfort, Erectile Function, Global Satisfaction with Sex Life, Orgasm, Anal Discomfort, Therapeutic Aids, Sexual Activities, Interfering Factors, and Screener Questions. RESULTS: In addition to content validity (patients indicate that items cover important aspects of their experiences) and face validity (patients indicate that items measure sexual function and satisfaction), the measure shows evidence for discriminant validity (domains discriminate between groups expected to be different) and convergent validity (strong correlations between scores on PROMIS and scores on conceptually similar older measures of sexual function), as well as favorable test-retest reliability among people not expected to change (interclass correlations from two administrations of the instrument, 1 month apart). CONCLUSIONS: The PROMIS SexFS offers researchers a reliable and valid set of tools to measure self-reported sexual function and satisfaction among diverse men and women. The measures are customizable; researchers can select the relevant domains and items comprising those domains for their study.

Authors
Flynn, KE; Lin, L; Cyranowski, JM; Reeve, BB; Reese, JB; Jeffery, DD; Smith, AW; Porter, LS; Dombeck, CB; Bruner, DW; Keefe, FJ; Weinfurt, KP
MLA Citation
Flynn, KE, Lin, L, Cyranowski, JM, Reeve, BB, Reese, JB, Jeffery, DD, Smith, AW, Porter, LS, Dombeck, CB, Bruner, DW, Keefe, FJ, and Weinfurt, KP. "Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer." The journal of sexual medicine 10 Suppl 1 (February 2013): 43-52.
PMID
23387911
Source
pubmed
Published In
The Journal of Sexual Medicine
Volume
10 Suppl 1
Publish Date
2013
Start Page
43
End Page
52
DOI
10.1111/j.1743-6109.2012.02995.x

Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer.

INTRODUCTION: We describe the development and validation of the Patient-Reported Outcomes Measurement Information System(®) Sexual Function and Satisfaction (PROMIS(®) SexFS; National Institutes of Health) measures, version 1.0, for cancer populations. AIM: To develop a customizable self-report measure of sexual function and satisfaction as part of the U.S. National Institutes of Health PROMIS Network. METHODS: Our multidisciplinary working group followed a comprehensive protocol for developing psychometrically robust patient-reported outcome measures including qualitative (scale development) and quantitative (psychometric evaluation) development. We performed an extensive literature review, conducted 16 focus groups with cancer patients and multiple discussions with clinicians, and evaluated candidate items in cognitive testing with patients. We administered items to 819 cancer patients. Items were calibrated using item-response theory and evaluated for reliability and validity. MAIN OUTCOME MEASURES: The PROMIS SexFS measures, version 1.0, include 81 items in 11 domains: Interest in Sexual Activity, Lubrication, Vaginal Discomfort, Erectile Function, Global Satisfaction with Sex Life, Orgasm, Anal Discomfort, Therapeutic Aids, Sexual Activities, Interfering Factors, and Screener Questions. RESULTS: In addition to content validity (patients indicate that items cover important aspects of their experiences) and face validity (patients indicate that items measure sexual function and satisfaction), the measure shows evidence for discriminant validity (domains discriminate between groups expected to be different) and convergent validity (strong correlations between scores on PROMIS and scores on conceptually similar older measures of sexual function), as well as favorable test-retest reliability among people not expected to change (interclass correlations from two administrations of the instrument, 1 month apart). CONCLUSIONS: The PROMIS SexFS offers researchers a reliable and valid set of tools to measure self-reported sexual function and satisfaction among diverse men and women. The measures are customizable; researchers can select the relevant domains and items comprising those domains for their study.

Authors
Flynn, KE; Lin, L; Cyranowski, JM; Reeve, BB; Reese, JB; Jeffery, DD; Smith, AW; Porter, LS; Dombeck, CB; Bruner, DW; Keefe, FJ; Weinfurt, KP
MLA Citation
Flynn, KE, Lin, L, Cyranowski, JM, Reeve, BB, Reese, JB, Jeffery, DD, Smith, AW, Porter, LS, Dombeck, CB, Bruner, DW, Keefe, FJ, and Weinfurt, KP. "Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer." The journal of sexual medicine 10 Suppl 1 (February 2013): 43-52.
PMID
23387911
Source
pubmed
Published In
The Journal of Sexual Medicine
Volume
10 Suppl 1
Publish Date
2013
Start Page
43
End Page
52
DOI
10.1111/j.1743-6109.2012.02995.x

Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer.

INTRODUCTION: We describe the development and validation of the Patient-Reported Outcomes Measurement Information System(®) Sexual Function and Satisfaction (PROMIS(®) SexFS; National Institutes of Health) measures, version 1.0, for cancer populations. AIM: To develop a customizable self-report measure of sexual function and satisfaction as part of the U.S. National Institutes of Health PROMIS Network. METHODS: Our multidisciplinary working group followed a comprehensive protocol for developing psychometrically robust patient-reported outcome measures including qualitative (scale development) and quantitative (psychometric evaluation) development. We performed an extensive literature review, conducted 16 focus groups with cancer patients and multiple discussions with clinicians, and evaluated candidate items in cognitive testing with patients. We administered items to 819 cancer patients. Items were calibrated using item-response theory and evaluated for reliability and validity. MAIN OUTCOME MEASURES: The PROMIS SexFS measures, version 1.0, include 81 items in 11 domains: Interest in Sexual Activity, Lubrication, Vaginal Discomfort, Erectile Function, Global Satisfaction with Sex Life, Orgasm, Anal Discomfort, Therapeutic Aids, Sexual Activities, Interfering Factors, and Screener Questions. RESULTS: In addition to content validity (patients indicate that items cover important aspects of their experiences) and face validity (patients indicate that items measure sexual function and satisfaction), the measure shows evidence for discriminant validity (domains discriminate between groups expected to be different) and convergent validity (strong correlations between scores on PROMIS and scores on conceptually similar older measures of sexual function), as well as favorable test-retest reliability among people not expected to change (interclass correlations from two administrations of the instrument, 1 month apart). CONCLUSIONS: The PROMIS SexFS offers researchers a reliable and valid set of tools to measure self-reported sexual function and satisfaction among diverse men and women. The measures are customizable; researchers can select the relevant domains and items comprising those domains for their study.

Authors
Flynn, KE; Lin, L; Cyranowski, JM; Reeve, BB; Reese, JB; Jeffery, DD; Smith, AW; Porter, LS; Dombeck, CB; Bruner, DW; Keefe, FJ; Weinfurt, KP
MLA Citation
Flynn, KE, Lin, L, Cyranowski, JM, Reeve, BB, Reese, JB, Jeffery, DD, Smith, AW, Porter, LS, Dombeck, CB, Bruner, DW, Keefe, FJ, and Weinfurt, KP. "Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer." The journal of sexual medicine 10 Suppl 1 (February 2013): 43-52.
PMID
23387911
Source
pubmed
Published In
The Journal of Sexual Medicine
Volume
10 Suppl 1
Publish Date
2013
Start Page
43
End Page
52
DOI
10.1111/j.1743-6109.2012.02995.x

Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer.

INTRODUCTION: We describe the development and validation of the Patient-Reported Outcomes Measurement Information System(®) Sexual Function and Satisfaction (PROMIS(®) SexFS; National Institutes of Health) measures, version 1.0, for cancer populations. AIM: To develop a customizable self-report measure of sexual function and satisfaction as part of the U.S. National Institutes of Health PROMIS Network. METHODS: Our multidisciplinary working group followed a comprehensive protocol for developing psychometrically robust patient-reported outcome measures including qualitative (scale development) and quantitative (psychometric evaluation) development. We performed an extensive literature review, conducted 16 focus groups with cancer patients and multiple discussions with clinicians, and evaluated candidate items in cognitive testing with patients. We administered items to 819 cancer patients. Items were calibrated using item-response theory and evaluated for reliability and validity. MAIN OUTCOME MEASURES: The PROMIS SexFS measures, version 1.0, include 81 items in 11 domains: Interest in Sexual Activity, Lubrication, Vaginal Discomfort, Erectile Function, Global Satisfaction with Sex Life, Orgasm, Anal Discomfort, Therapeutic Aids, Sexual Activities, Interfering Factors, and Screener Questions. RESULTS: In addition to content validity (patients indicate that items cover important aspects of their experiences) and face validity (patients indicate that items measure sexual function and satisfaction), the measure shows evidence for discriminant validity (domains discriminate between groups expected to be different) and convergent validity (strong correlations between scores on PROMIS and scores on conceptually similar older measures of sexual function), as well as favorable test-retest reliability among people not expected to change (interclass correlations from two administrations of the instrument, 1 month apart). CONCLUSIONS: The PROMIS SexFS offers researchers a reliable and valid set of tools to measure self-reported sexual function and satisfaction among diverse men and women. The measures are customizable; researchers can select the relevant domains and items comprising those domains for their study.

Authors
Flynn, KE; Lin, L; Cyranowski, JM; Reeve, BB; Reese, JB; Jeffery, DD; Smith, AW; Porter, LS; Dombeck, CB; Bruner, DW; Keefe, FJ; Weinfurt, KP
MLA Citation
Flynn, KE, Lin, L, Cyranowski, JM, Reeve, BB, Reese, JB, Jeffery, DD, Smith, AW, Porter, LS, Dombeck, CB, Bruner, DW, Keefe, FJ, and Weinfurt, KP. "Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer." The journal of sexual medicine 10 Suppl 1 (February 2013): 43-52.
PMID
23387911
Source
pubmed
Published In
The Journal of Sexual Medicine
Volume
10 Suppl 1
Publish Date
2013
Start Page
43
End Page
52
DOI
10.1111/j.1743-6109.2012.02995.x

Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer.

We describe the development and validation of the Patient-Reported Outcomes Measurement Information System(®) Sexual Function and Satisfaction (PROMIS(®) SexFS; National Institutes of Health) measures, version 1.0, for cancer populations.To develop a customizable self-report measure of sexual function and satisfaction as part of the U.S. National Institutes of Health PROMIS Network.Our multidisciplinary working group followed a comprehensive protocol for developing psychometrically robust patient-reported outcome measures including qualitative (scale development) and quantitative (psychometric evaluation) development. We performed an extensive literature review, conducted 16 focus groups with cancer patients and multiple discussions with clinicians, and evaluated candidate items in cognitive testing with patients. We administered items to 819 cancer patients. Items were calibrated using item-response theory and evaluated for reliability and validity.The PROMIS SexFS measures, version 1.0, include 81 items in 11 domains: Interest in Sexual Activity, Lubrication, Vaginal Discomfort, Erectile Function, Global Satisfaction with Sex Life, Orgasm, Anal Discomfort, Therapeutic Aids, Sexual Activities, Interfering Factors, and Screener Questions.In addition to content validity (patients indicate that items cover important aspects of their experiences) and face validity (patients indicate that items measure sexual function and satisfaction), the measure shows evidence for discriminant validity (domains discriminate between groups expected to be different) and convergent validity (strong correlations between scores on PROMIS and scores on conceptually similar older measures of sexual function), as well as favorable test-retest reliability among people not expected to change (interclass correlations from two administrations of the instrument, 1 month apart).The PROMIS SexFS offers researchers a reliable and valid set of tools to measure self-reported sexual function and satisfaction among diverse men and women. The measures are customizable; researchers can select the relevant domains and items comprising those domains for their study.

Authors
Flynn, KE; Lin, L; Cyranowski, JM; Reeve, BB; Reese, JB; Jeffery, DD; Smith, AW; Porter, LS; Dombeck, CB; Bruner, DW; Keefe, FJ; Weinfurt, KP
MLA Citation
Flynn, KE, Lin, L, Cyranowski, JM, Reeve, BB, Reese, JB, Jeffery, DD, Smith, AW, Porter, LS, Dombeck, CB, Bruner, DW, Keefe, FJ, and Weinfurt, KP. "Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer." J Sex Med 10 Suppl 1 (February 2013): 43-52.
PMID
23387911
Source
epmc
Published In
The Journal of Sexual Medicine
Volume
10 Suppl 1
Publish Date
2013
Start Page
43
End Page
52
DOI
10.1111/j.1743-6109.2012.02995.x

Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer.

We describe the development and validation of the Patient-Reported Outcomes Measurement Information System(®) Sexual Function and Satisfaction (PROMIS(®) SexFS; National Institutes of Health) measures, version 1.0, for cancer populations.To develop a customizable self-report measure of sexual function and satisfaction as part of the U.S. National Institutes of Health PROMIS Network.Our multidisciplinary working group followed a comprehensive protocol for developing psychometrically robust patient-reported outcome measures including qualitative (scale development) and quantitative (psychometric evaluation) development. We performed an extensive literature review, conducted 16 focus groups with cancer patients and multiple discussions with clinicians, and evaluated candidate items in cognitive testing with patients. We administered items to 819 cancer patients. Items were calibrated using item-response theory and evaluated for reliability and validity.The PROMIS SexFS measures, version 1.0, include 81 items in 11 domains: Interest in Sexual Activity, Lubrication, Vaginal Discomfort, Erectile Function, Global Satisfaction with Sex Life, Orgasm, Anal Discomfort, Therapeutic Aids, Sexual Activities, Interfering Factors, and Screener Questions.In addition to content validity (patients indicate that items cover important aspects of their experiences) and face validity (patients indicate that items measure sexual function and satisfaction), the measure shows evidence for discriminant validity (domains discriminate between groups expected to be different) and convergent validity (strong correlations between scores on PROMIS and scores on conceptually similar older measures of sexual function), as well as favorable test-retest reliability among people not expected to change (interclass correlations from two administrations of the instrument, 1 month apart).The PROMIS SexFS offers researchers a reliable and valid set of tools to measure self-reported sexual function and satisfaction among diverse men and women. The measures are customizable; researchers can select the relevant domains and items comprising those domains for their study.

Authors
Flynn, KE; Lin, L; Cyranowski, JM; Reeve, BB; Reese, JB; Jeffery, DD; Smith, AW; Porter, LS; Dombeck, CB; Bruner, DW; Keefe, FJ; Weinfurt, KP
MLA Citation
Flynn, KE, Lin, L, Cyranowski, JM, Reeve, BB, Reese, JB, Jeffery, DD, Smith, AW, Porter, LS, Dombeck, CB, Bruner, DW, Keefe, FJ, and Weinfurt, KP. "Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer." J Sex Med 10 Suppl 1 (February 2013): 43-52.
PMID
23387911
Source
epmc
Published In
The Journal of Sexual Medicine
Volume
10 Suppl 1
Publish Date
2013
Start Page
43
End Page
52
DOI
10.1111/j.1743-6109.2012.02995.x

Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer.

We describe the development and validation of the Patient-Reported Outcomes Measurement Information System(®) Sexual Function and Satisfaction (PROMIS(®) SexFS; National Institutes of Health) measures, version 1.0, for cancer populations.To develop a customizable self-report measure of sexual function and satisfaction as part of the U.S. National Institutes of Health PROMIS Network.Our multidisciplinary working group followed a comprehensive protocol for developing psychometrically robust patient-reported outcome measures including qualitative (scale development) and quantitative (psychometric evaluation) development. We performed an extensive literature review, conducted 16 focus groups with cancer patients and multiple discussions with clinicians, and evaluated candidate items in cognitive testing with patients. We administered items to 819 cancer patients. Items were calibrated using item-response theory and evaluated for reliability and validity.The PROMIS SexFS measures, version 1.0, include 81 items in 11 domains: Interest in Sexual Activity, Lubrication, Vaginal Discomfort, Erectile Function, Global Satisfaction with Sex Life, Orgasm, Anal Discomfort, Therapeutic Aids, Sexual Activities, Interfering Factors, and Screener Questions.In addition to content validity (patients indicate that items cover important aspects of their experiences) and face validity (patients indicate that items measure sexual function and satisfaction), the measure shows evidence for discriminant validity (domains discriminate between groups expected to be different) and convergent validity (strong correlations between scores on PROMIS and scores on conceptually similar older measures of sexual function), as well as favorable test-retest reliability among people not expected to change (interclass correlations from two administrations of the instrument, 1 month apart).The PROMIS SexFS offers researchers a reliable and valid set of tools to measure self-reported sexual function and satisfaction among diverse men and women. The measures are customizable; researchers can select the relevant domains and items comprising those domains for their study.

Authors
Flynn, KE; Lin, L; Cyranowski, JM; Reeve, BB; Reese, JB; Jeffery, DD; Smith, AW; Porter, LS; Dombeck, CB; Bruner, DW; Keefe, FJ; Weinfurt, KP
MLA Citation
Flynn, KE, Lin, L, Cyranowski, JM, Reeve, BB, Reese, JB, Jeffery, DD, Smith, AW, Porter, LS, Dombeck, CB, Bruner, DW, Keefe, FJ, and Weinfurt, KP. "Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer." J Sex Med 10 Suppl 1 (February 2013): 43-52.
PMID
23387911
Source
epmc
Published In
The Journal of Sexual Medicine
Volume
10 Suppl 1
Publish Date
2013
Start Page
43
End Page
52
DOI
10.1111/j.1743-6109.2012.02995.x

Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer.

We describe the development and validation of the Patient-Reported Outcomes Measurement Information System(®) Sexual Function and Satisfaction (PROMIS(®) SexFS; National Institutes of Health) measures, version 1.0, for cancer populations.To develop a customizable self-report measure of sexual function and satisfaction as part of the U.S. National Institutes of Health PROMIS Network.Our multidisciplinary working group followed a comprehensive protocol for developing psychometrically robust patient-reported outcome measures including qualitative (scale development) and quantitative (psychometric evaluation) development. We performed an extensive literature review, conducted 16 focus groups with cancer patients and multiple discussions with clinicians, and evaluated candidate items in cognitive testing with patients. We administered items to 819 cancer patients. Items were calibrated using item-response theory and evaluated for reliability and validity.The PROMIS SexFS measures, version 1.0, include 81 items in 11 domains: Interest in Sexual Activity, Lubrication, Vaginal Discomfort, Erectile Function, Global Satisfaction with Sex Life, Orgasm, Anal Discomfort, Therapeutic Aids, Sexual Activities, Interfering Factors, and Screener Questions.In addition to content validity (patients indicate that items cover important aspects of their experiences) and face validity (patients indicate that items measure sexual function and satisfaction), the measure shows evidence for discriminant validity (domains discriminate between groups expected to be different) and convergent validity (strong correlations between scores on PROMIS and scores on conceptually similar older measures of sexual function), as well as favorable test-retest reliability among people not expected to change (interclass correlations from two administrations of the instrument, 1 month apart).The PROMIS SexFS offers researchers a reliable and valid set of tools to measure self-reported sexual function and satisfaction among diverse men and women. The measures are customizable; researchers can select the relevant domains and items comprising those domains for their study.

Authors
Flynn, KE; Lin, L; Cyranowski, JM; Reeve, BB; Reese, JB; Jeffery, DD; Smith, AW; Porter, LS; Dombeck, CB; Bruner, DW; Keefe, FJ; Weinfurt, KP
MLA Citation
Flynn, KE, Lin, L, Cyranowski, JM, Reeve, BB, Reese, JB, Jeffery, DD, Smith, AW, Porter, LS, Dombeck, CB, Bruner, DW, Keefe, FJ, and Weinfurt, KP. "Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer." J Sex Med 10 Suppl 1 (February 2013): 43-52.
PMID
23387911
Source
epmc
Published In
The Journal of Sexual Medicine
Volume
10 Suppl 1
Publish Date
2013
Start Page
43
End Page
52
DOI
10.1111/j.1743-6109.2012.02995.x

Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer.

We describe the development and validation of the Patient-Reported Outcomes Measurement Information System(®) Sexual Function and Satisfaction (PROMIS(®) SexFS; National Institutes of Health) measures, version 1.0, for cancer populations.To develop a customizable self-report measure of sexual function and satisfaction as part of the U.S. National Institutes of Health PROMIS Network.Our multidisciplinary working group followed a comprehensive protocol for developing psychometrically robust patient-reported outcome measures including qualitative (scale development) and quantitative (psychometric evaluation) development. We performed an extensive literature review, conducted 16 focus groups with cancer patients and multiple discussions with clinicians, and evaluated candidate items in cognitive testing with patients. We administered items to 819 cancer patients. Items were calibrated using item-response theory and evaluated for reliability and validity.The PROMIS SexFS measures, version 1.0, include 81 items in 11 domains: Interest in Sexual Activity, Lubrication, Vaginal Discomfort, Erectile Function, Global Satisfaction with Sex Life, Orgasm, Anal Discomfort, Therapeutic Aids, Sexual Activities, Interfering Factors, and Screener Questions.In addition to content validity (patients indicate that items cover important aspects of their experiences) and face validity (patients indicate that items measure sexual function and satisfaction), the measure shows evidence for discriminant validity (domains discriminate between groups expected to be different) and convergent validity (strong correlations between scores on PROMIS and scores on conceptually similar older measures of sexual function), as well as favorable test-retest reliability among people not expected to change (interclass correlations from two administrations of the instrument, 1 month apart).The PROMIS SexFS offers researchers a reliable and valid set of tools to measure self-reported sexual function and satisfaction among diverse men and women. The measures are customizable; researchers can select the relevant domains and items comprising those domains for their study.

Authors
Flynn, KE; Lin, L; Cyranowski, JM; Reeve, BB; Reese, JB; Jeffery, DD; Smith, AW; Porter, LS; Dombeck, CB; Bruner, DW; Keefe, FJ; Weinfurt, KP
MLA Citation
Flynn, KE, Lin, L, Cyranowski, JM, Reeve, BB, Reese, JB, Jeffery, DD, Smith, AW, Porter, LS, Dombeck, CB, Bruner, DW, Keefe, FJ, and Weinfurt, KP. "Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer." The journal of sexual medicine 10 Suppl 1 (February 2013): 43-52.
PMID
23387911
Source
epmc
Published In
The Journal of Sexual Medicine
Volume
10 Suppl 1
Publish Date
2013
Start Page
43
End Page
52
DOI
10.1111/j.1743-6109.2012.02995.x

Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer.

We describe the development and validation of the Patient-Reported Outcomes Measurement Information System(®) Sexual Function and Satisfaction (PROMIS(®) SexFS; National Institutes of Health) measures, version 1.0, for cancer populations.To develop a customizable self-report measure of sexual function and satisfaction as part of the U.S. National Institutes of Health PROMIS Network.Our multidisciplinary working group followed a comprehensive protocol for developing psychometrically robust patient-reported outcome measures including qualitative (scale development) and quantitative (psychometric evaluation) development. We performed an extensive literature review, conducted 16 focus groups with cancer patients and multiple discussions with clinicians, and evaluated candidate items in cognitive testing with patients. We administered items to 819 cancer patients. Items were calibrated using item-response theory and evaluated for reliability and validity.The PROMIS SexFS measures, version 1.0, include 81 items in 11 domains: Interest in Sexual Activity, Lubrication, Vaginal Discomfort, Erectile Function, Global Satisfaction with Sex Life, Orgasm, Anal Discomfort, Therapeutic Aids, Sexual Activities, Interfering Factors, and Screener Questions.In addition to content validity (patients indicate that items cover important aspects of their experiences) and face validity (patients indicate that items measure sexual function and satisfaction), the measure shows evidence for discriminant validity (domains discriminate between groups expected to be different) and convergent validity (strong correlations between scores on PROMIS and scores on conceptually similar older measures of sexual function), as well as favorable test-retest reliability among people not expected to change (interclass correlations from two administrations of the instrument, 1 month apart).The PROMIS SexFS offers researchers a reliable and valid set of tools to measure self-reported sexual function and satisfaction among diverse men and women. The measures are customizable; researchers can select the relevant domains and items comprising those domains for their study.

Authors
Flynn, KE; Lin, L; Cyranowski, JM; Reeve, BB; Reese, JB; Jeffery, DD; Smith, AW; Porter, LS; Dombeck, CB; Bruner, DW; Keefe, FJ; Weinfurt, KP
MLA Citation
Flynn, KE, Lin, L, Cyranowski, JM, Reeve, BB, Reese, JB, Jeffery, DD, Smith, AW, Porter, LS, Dombeck, CB, Bruner, DW, Keefe, FJ, and Weinfurt, KP. "Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer." The journal of sexual medicine 10 Suppl 1 (February 2013): 43-52.
PMID
23387911
Source
epmc
Published In
The Journal of Sexual Medicine
Volume
10 Suppl 1
Publish Date
2013
Start Page
43
End Page
52
DOI
10.1111/j.1743-6109.2012.02995.x

Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer.

We describe the development and validation of the Patient-Reported Outcomes Measurement Information System(®) Sexual Function and Satisfaction (PROMIS(®) SexFS; National Institutes of Health) measures, version 1.0, for cancer populations.To develop a customizable self-report measure of sexual function and satisfaction as part of the U.S. National Institutes of Health PROMIS Network.Our multidisciplinary working group followed a comprehensive protocol for developing psychometrically robust patient-reported outcome measures including qualitative (scale development) and quantitative (psychometric evaluation) development. We performed an extensive literature review, conducted 16 focus groups with cancer patients and multiple discussions with clinicians, and evaluated candidate items in cognitive testing with patients. We administered items to 819 cancer patients. Items were calibrated using item-response theory and evaluated for reliability and validity.The PROMIS SexFS measures, version 1.0, include 81 items in 11 domains: Interest in Sexual Activity, Lubrication, Vaginal Discomfort, Erectile Function, Global Satisfaction with Sex Life, Orgasm, Anal Discomfort, Therapeutic Aids, Sexual Activities, Interfering Factors, and Screener Questions.In addition to content validity (patients indicate that items cover important aspects of their experiences) and face validity (patients indicate that items measure sexual function and satisfaction), the measure shows evidence for discriminant validity (domains discriminate between groups expected to be different) and convergent validity (strong correlations between scores on PROMIS and scores on conceptually similar older measures of sexual function), as well as favorable test-retest reliability among people not expected to change (interclass correlations from two administrations of the instrument, 1 month apart).The PROMIS SexFS offers researchers a reliable and valid set of tools to measure self-reported sexual function and satisfaction among diverse men and women. The measures are customizable; researchers can select the relevant domains and items comprising those domains for their study.

Authors
Flynn, KE; Lin, L; Cyranowski, JM; Reeve, BB; Reese, JB; Jeffery, DD; Smith, AW; Porter, LS; Dombeck, CB; Bruner, DW; Keefe, FJ; Weinfurt, KP
MLA Citation
Flynn, KE, Lin, L, Cyranowski, JM, Reeve, BB, Reese, JB, Jeffery, DD, Smith, AW, Porter, LS, Dombeck, CB, Bruner, DW, Keefe, FJ, and Weinfurt, KP. "Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer." The journal of sexual medicine 10 Suppl 1 (February 2013): 43-52.
PMID
23387911
Source
epmc
Published In
The Journal of Sexual Medicine
Volume
10 Suppl 1
Publish Date
2013
Start Page
43
End Page
52
DOI
10.1111/j.1743-6109.2012.02995.x

Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer.

We describe the development and validation of the Patient-Reported Outcomes Measurement Information System(®) Sexual Function and Satisfaction (PROMIS(®) SexFS; National Institutes of Health) measures, version 1.0, for cancer populations.To develop a customizable self-report measure of sexual function and satisfaction as part of the U.S. National Institutes of Health PROMIS Network.Our multidisciplinary working group followed a comprehensive protocol for developing psychometrically robust patient-reported outcome measures including qualitative (scale development) and quantitative (psychometric evaluation) development. We performed an extensive literature review, conducted 16 focus groups with cancer patients and multiple discussions with clinicians, and evaluated candidate items in cognitive testing with patients. We administered items to 819 cancer patients. Items were calibrated using item-response theory and evaluated for reliability and validity.The PROMIS SexFS measures, version 1.0, include 81 items in 11 domains: Interest in Sexual Activity, Lubrication, Vaginal Discomfort, Erectile Function, Global Satisfaction with Sex Life, Orgasm, Anal Discomfort, Therapeutic Aids, Sexual Activities, Interfering Factors, and Screener Questions.In addition to content validity (patients indicate that items cover important aspects of their experiences) and face validity (patients indicate that items measure sexual function and satisfaction), the measure shows evidence for discriminant validity (domains discriminate between groups expected to be different) and convergent validity (strong correlations between scores on PROMIS and scores on conceptually similar older measures of sexual function), as well as favorable test-retest reliability among people not expected to change (interclass correlations from two administrations of the instrument, 1 month apart).The PROMIS SexFS offers researchers a reliable and valid set of tools to measure self-reported sexual function and satisfaction among diverse men and women. The measures are customizable; researchers can select the relevant domains and items comprising those domains for their study.

Authors
Flynn, KE; Lin, L; Cyranowski, JM; Reeve, BB; Reese, JB; Jeffery, DD; Smith, AW; Porter, LS; Dombeck, CB; Bruner, DW; Keefe, FJ; Weinfurt, KP
MLA Citation
Flynn, KE, Lin, L, Cyranowski, JM, Reeve, BB, Reese, JB, Jeffery, DD, Smith, AW, Porter, LS, Dombeck, CB, Bruner, DW, Keefe, FJ, and Weinfurt, KP. "Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer." The journal of sexual medicine 10 Suppl 1 (February 2013): 43-52.
PMID
23387911
Source
epmc
Published In
The Journal of Sexual Medicine
Volume
10 Suppl 1
Publish Date
2013
Start Page
43
End Page
52
DOI
10.1111/j.1743-6109.2012.02995.x

Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer.

We describe the development and validation of the Patient-Reported Outcomes Measurement Information System(®) Sexual Function and Satisfaction (PROMIS(®) SexFS; National Institutes of Health) measures, version 1.0, for cancer populations.To develop a customizable self-report measure of sexual function and satisfaction as part of the U.S. National Institutes of Health PROMIS Network.Our multidisciplinary working group followed a comprehensive protocol for developing psychometrically robust patient-reported outcome measures including qualitative (scale development) and quantitative (psychometric evaluation) development. We performed an extensive literature review, conducted 16 focus groups with cancer patients and multiple discussions with clinicians, and evaluated candidate items in cognitive testing with patients. We administered items to 819 cancer patients. Items were calibrated using item-response theory and evaluated for reliability and validity.The PROMIS SexFS measures, version 1.0, include 81 items in 11 domains: Interest in Sexual Activity, Lubrication, Vaginal Discomfort, Erectile Function, Global Satisfaction with Sex Life, Orgasm, Anal Discomfort, Therapeutic Aids, Sexual Activities, Interfering Factors, and Screener Questions.In addition to content validity (patients indicate that items cover important aspects of their experiences) and face validity (patients indicate that items measure sexual function and satisfaction), the measure shows evidence for discriminant validity (domains discriminate between groups expected to be different) and convergent validity (strong correlations between scores on PROMIS and scores on conceptually similar older measures of sexual function), as well as favorable test-retest reliability among people not expected to change (interclass correlations from two administrations of the instrument, 1 month apart).The PROMIS SexFS offers researchers a reliable and valid set of tools to measure self-reported sexual function and satisfaction among diverse men and women. The measures are customizable; researchers can select the relevant domains and items comprising those domains for their study.

Authors
Flynn, KE; Lin, L; Cyranowski, JM; Reeve, BB; Reese, JB; Jeffery, DD; Smith, AW; Porter, LS; Dombeck, CB; Bruner, DW; Keefe, FJ; Weinfurt, KP
MLA Citation
Flynn, KE, Lin, L, Cyranowski, JM, Reeve, BB, Reese, JB, Jeffery, DD, Smith, AW, Porter, LS, Dombeck, CB, Bruner, DW, Keefe, FJ, and Weinfurt, KP. "Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer." J Sex Med 10 Suppl 1 (February 2013): 43-52.
PMID
23387911
Source
epmc
Published In
The Journal of Sexual Medicine
Volume
10 Suppl 1
Publish Date
2013
Start Page
43
End Page
52
DOI
10.1111/j.1743-6109.2012.02995.x

Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer.

We describe the development and validation of the Patient-Reported Outcomes Measurement Information System(®) Sexual Function and Satisfaction (PROMIS(®) SexFS; National Institutes of Health) measures, version 1.0, for cancer populations.To develop a customizable self-report measure of sexual function and satisfaction as part of the U.S. National Institutes of Health PROMIS Network.Our multidisciplinary working group followed a comprehensive protocol for developing psychometrically robust patient-reported outcome measures including qualitative (scale development) and quantitative (psychometric evaluation) development. We performed an extensive literature review, conducted 16 focus groups with cancer patients and multiple discussions with clinicians, and evaluated candidate items in cognitive testing with patients. We administered items to 819 cancer patients. Items were calibrated using item-response theory and evaluated for reliability and validity.The PROMIS SexFS measures, version 1.0, include 81 items in 11 domains: Interest in Sexual Activity, Lubrication, Vaginal Discomfort, Erectile Function, Global Satisfaction with Sex Life, Orgasm, Anal Discomfort, Therapeutic Aids, Sexual Activities, Interfering Factors, and Screener Questions.In addition to content validity (patients indicate that items cover important aspects of their experiences) and face validity (patients indicate that items measure sexual function and satisfaction), the measure shows evidence for discriminant validity (domains discriminate between groups expected to be different) and convergent validity (strong correlations between scores on PROMIS and scores on conceptually similar older measures of sexual function), as well as favorable test-retest reliability among people not expected to change (interclass correlations from two administrations of the instrument, 1 month apart).The PROMIS SexFS offers researchers a reliable and valid set of tools to measure self-reported sexual function and satisfaction among diverse men and women. The measures are customizable; researchers can select the relevant domains and items comprising those domains for their study.

Authors
Flynn, KE; Lin, L; Cyranowski, JM; Reeve, BB; Reese, JB; Jeffery, DD; Smith, AW; Porter, LS; Dombeck, CB; Bruner, DW; Keefe, FJ; Weinfurt, KP
MLA Citation
Flynn, KE, Lin, L, Cyranowski, JM, Reeve, BB, Reese, JB, Jeffery, DD, Smith, AW, Porter, LS, Dombeck, CB, Bruner, DW, Keefe, FJ, and Weinfurt, KP. "Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer." J Sex Med 10 Suppl 1 (February 2013): 43-52.
PMID
23387911
Source
epmc
Published In
The Journal of Sexual Medicine
Volume
10 Suppl 1
Publish Date
2013
Start Page
43
End Page
52
DOI
10.1111/j.1743-6109.2012.02995.x

Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer.

We describe the development and validation of the Patient-Reported Outcomes Measurement Information System(®) Sexual Function and Satisfaction (PROMIS(®) SexFS; National Institutes of Health) measures, version 1.0, for cancer populations.To develop a customizable self-report measure of sexual function and satisfaction as part of the U.S. National Institutes of Health PROMIS Network.Our multidisciplinary working group followed a comprehensive protocol for developing psychometrically robust patient-reported outcome measures including qualitative (scale development) and quantitative (psychometric evaluation) development. We performed an extensive literature review, conducted 16 focus groups with cancer patients and multiple discussions with clinicians, and evaluated candidate items in cognitive testing with patients. We administered items to 819 cancer patients. Items were calibrated using item-response theory and evaluated for reliability and validity.The PROMIS SexFS measures, version 1.0, include 81 items in 11 domains: Interest in Sexual Activity, Lubrication, Vaginal Discomfort, Erectile Function, Global Satisfaction with Sex Life, Orgasm, Anal Discomfort, Therapeutic Aids, Sexual Activities, Interfering Factors, and Screener Questions.In addition to content validity (patients indicate that items cover important aspects of their experiences) and face validity (patients indicate that items measure sexual function and satisfaction), the measure shows evidence for discriminant validity (domains discriminate between groups expected to be different) and convergent validity (strong correlations between scores on PROMIS and scores on conceptually similar older measures of sexual function), as well as favorable test-retest reliability among people not expected to change (interclass correlations from two administrations of the instrument, 1 month apart).The PROMIS SexFS offers researchers a reliable and valid set of tools to measure self-reported sexual function and satisfaction among diverse men and women. The measures are customizable; researchers can select the relevant domains and items comprising those domains for their study.

Authors
Flynn, KE; Lin, L; Cyranowski, JM; Reeve, BB; Reese, JB; Jeffery, DD; Smith, AW; Porter, LS; Dombeck, CB; Bruner, DW; Keefe, FJ; Weinfurt, KP
MLA Citation
Flynn, KE, Lin, L, Cyranowski, JM, Reeve, BB, Reese, JB, Jeffery, DD, Smith, AW, Porter, LS, Dombeck, CB, Bruner, DW, Keefe, FJ, and Weinfurt, KP. "Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer." J Sex Med 10 Suppl 1 (February 2013): 43-52.
PMID
23387911
Source
epmc
Published In
The Journal of Sexual Medicine
Volume
10 Suppl 1
Publish Date
2013
Start Page
43
End Page
52
DOI
10.1111/j.1743-6109.2012.02995.x

Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer.

We describe the development and validation of the Patient-Reported Outcomes Measurement Information System(®) Sexual Function and Satisfaction (PROMIS(®) SexFS; National Institutes of Health) measures, version 1.0, for cancer populations.To develop a customizable self-report measure of sexual function and satisfaction as part of the U.S. National Institutes of Health PROMIS Network.Our multidisciplinary working group followed a comprehensive protocol for developing psychometrically robust patient-reported outcome measures including qualitative (scale development) and quantitative (psychometric evaluation) development. We performed an extensive literature review, conducted 16 focus groups with cancer patients and multiple discussions with clinicians, and evaluated candidate items in cognitive testing with patients. We administered items to 819 cancer patients. Items were calibrated using item-response theory and evaluated for reliability and validity.The PROMIS SexFS measures, version 1.0, include 81 items in 11 domains: Interest in Sexual Activity, Lubrication, Vaginal Discomfort, Erectile Function, Global Satisfaction with Sex Life, Orgasm, Anal Discomfort, Therapeutic Aids, Sexual Activities, Interfering Factors, and Screener Questions.In addition to content validity (patients indicate that items cover important aspects of their experiences) and face validity (patients indicate that items measure sexual function and satisfaction), the measure shows evidence for discriminant validity (domains discriminate between groups expected to be different) and convergent validity (strong correlations between scores on PROMIS and scores on conceptually similar older measures of sexual function), as well as favorable test-retest reliability among people not expected to change (interclass correlations from two administrations of the instrument, 1 month apart).The PROMIS SexFS offers researchers a reliable and valid set of tools to measure self-reported sexual function and satisfaction among diverse men and women. The measures are customizable; researchers can select the relevant domains and items comprising those domains for their study.

Authors
Flynn, KE; Lin, L; Cyranowski, JM; Reeve, BB; Reese, JB; Jeffery, DD; Smith, AW; Porter, LS; Dombeck, CB; Bruner, DW; Keefe, FJ; Weinfurt, KP
MLA Citation
Flynn, KE, Lin, L, Cyranowski, JM, Reeve, BB, Reese, JB, Jeffery, DD, Smith, AW, Porter, LS, Dombeck, CB, Bruner, DW, Keefe, FJ, and Weinfurt, KP. "Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer." J Sex Med 10 Suppl 1 (February 2013): 43-52.
PMID
23387911
Source
epmc
Published In
The Journal of Sexual Medicine
Volume
10 Suppl 1
Publish Date
2013
Start Page
43
End Page
52
DOI
10.1111/j.1743-6109.2012.02995.x

Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer.

We describe the development and validation of the Patient-Reported Outcomes Measurement Information System(®) Sexual Function and Satisfaction (PROMIS(®) SexFS; National Institutes of Health) measures, version 1.0, for cancer populations.To develop a customizable self-report measure of sexual function and satisfaction as part of the U.S. National Institutes of Health PROMIS Network.Our multidisciplinary working group followed a comprehensive protocol for developing psychometrically robust patient-reported outcome measures including qualitative (scale development) and quantitative (psychometric evaluation) development. We performed an extensive literature review, conducted 16 focus groups with cancer patients and multiple discussions with clinicians, and evaluated candidate items in cognitive testing with patients. We administered items to 819 cancer patients. Items were calibrated using item-response theory and evaluated for reliability and validity.The PROMIS SexFS measures, version 1.0, include 81 items in 11 domains: Interest in Sexual Activity, Lubrication, Vaginal Discomfort, Erectile Function, Global Satisfaction with Sex Life, Orgasm, Anal Discomfort, Therapeutic Aids, Sexual Activities, Interfering Factors, and Screener Questions.In addition to content validity (patients indicate that items cover important aspects of their experiences) and face validity (patients indicate that items measure sexual function and satisfaction), the measure shows evidence for discriminant validity (domains discriminate between groups expected to be different) and convergent validity (strong correlations between scores on PROMIS and scores on conceptually similar older measures of sexual function), as well as favorable test-retest reliability among people not expected to change (interclass correlations from two administrations of the instrument, 1 month apart).The PROMIS SexFS offers researchers a reliable and valid set of tools to measure self-reported sexual function and satisfaction among diverse men and women. The measures are customizable; researchers can select the relevant domains and items comprising those domains for their study.

Authors
Flynn, KE; Lin, L; Cyranowski, JM; Reeve, BB; Reese, JB; Jeffery, DD; Smith, AW; Porter, LS; Dombeck, CB; Bruner, DW; Keefe, FJ; Weinfurt, KP
MLA Citation
Flynn, KE, Lin, L, Cyranowski, JM, Reeve, BB, Reese, JB, Jeffery, DD, Smith, AW, Porter, LS, Dombeck, CB, Bruner, DW, Keefe, FJ, and Weinfurt, KP. "Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer." The journal of sexual medicine 10 Suppl 1 (February 2013): 43-52.
PMID
23387911
Source
epmc
Published In
The Journal of Sexual Medicine
Volume
10 Suppl 1
Publish Date
2013
Start Page
43
End Page
52
DOI
10.1111/j.1743-6109.2012.02995.x

Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer.

We describe the development and validation of the Patient-Reported Outcomes Measurement Information System(®) Sexual Function and Satisfaction (PROMIS(®) SexFS; National Institutes of Health) measures, version 1.0, for cancer populations.To develop a customizable self-report measure of sexual function and satisfaction as part of the U.S. National Institutes of Health PROMIS Network.Our multidisciplinary working group followed a comprehensive protocol for developing psychometrically robust patient-reported outcome measures including qualitative (scale development) and quantitative (psychometric evaluation) development. We performed an extensive literature review, conducted 16 focus groups with cancer patients and multiple discussions with clinicians, and evaluated candidate items in cognitive testing with patients. We administered items to 819 cancer patients. Items were calibrated using item-response theory and evaluated for reliability and validity.The PROMIS SexFS measures, version 1.0, include 81 items in 11 domains: Interest in Sexual Activity, Lubrication, Vaginal Discomfort, Erectile Function, Global Satisfaction with Sex Life, Orgasm, Anal Discomfort, Therapeutic Aids, Sexual Activities, Interfering Factors, and Screener Questions.In addition to content validity (patients indicate that items cover important aspects of their experiences) and face validity (patients indicate that items measure sexual function and satisfaction), the measure shows evidence for discriminant validity (domains discriminate between groups expected to be different) and convergent validity (strong correlations between scores on PROMIS and scores on conceptually similar older measures of sexual function), as well as favorable test-retest reliability among people not expected to change (interclass correlations from two administrations of the instrument, 1 month apart).The PROMIS SexFS offers researchers a reliable and valid set of tools to measure self-reported sexual function and satisfaction among diverse men and women. The measures are customizable; researchers can select the relevant domains and items comprising those domains for their study.

Authors
Flynn, KE; Lin, L; Cyranowski, JM; Reeve, BB; Reese, JB; Jeffery, DD; Smith, AW; Porter, LS; Dombeck, CB; Bruner, DW; Keefe, FJ; Weinfurt, KP
MLA Citation
Flynn, KE, Lin, L, Cyranowski, JM, Reeve, BB, Reese, JB, Jeffery, DD, Smith, AW, Porter, LS, Dombeck, CB, Bruner, DW, Keefe, FJ, and Weinfurt, KP. "Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer." The journal of sexual medicine 10 Suppl 1 (February 2013): 43-52.
PMID
23387911
Source
epmc
Published In
The Journal of Sexual Medicine
Volume
10 Suppl 1
Publish Date
2013
Start Page
43
End Page
52
DOI
10.1111/j.1743-6109.2012.02995.x

Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer.

We describe the development and validation of the Patient-Reported Outcomes Measurement Information System(®) Sexual Function and Satisfaction (PROMIS(®) SexFS; National Institutes of Health) measures, version 1.0, for cancer populations.To develop a customizable self-report measure of sexual function and satisfaction as part of the U.S. National Institutes of Health PROMIS Network.Our multidisciplinary working group followed a comprehensive protocol for developing psychometrically robust patient-reported outcome measures including qualitative (scale development) and quantitative (psychometric evaluation) development. We performed an extensive literature review, conducted 16 focus groups with cancer patients and multiple discussions with clinicians, and evaluated candidate items in cognitive testing with patients. We administered items to 819 cancer patients. Items were calibrated using item-response theory and evaluated for reliability and validity.The PROMIS SexFS measures, version 1.0, include 81 items in 11 domains: Interest in Sexual Activity, Lubrication, Vaginal Discomfort, Erectile Function, Global Satisfaction with Sex Life, Orgasm, Anal Discomfort, Therapeutic Aids, Sexual Activities, Interfering Factors, and Screener Questions.In addition to content validity (patients indicate that items cover important aspects of their experiences) and face validity (patients indicate that items measure sexual function and satisfaction), the measure shows evidence for discriminant validity (domains discriminate between groups expected to be different) and convergent validity (strong correlations between scores on PROMIS and scores on conceptually similar older measures of sexual function), as well as favorable test-retest reliability among people not expected to change (interclass correlations from two administrations of the instrument, 1 month apart).The PROMIS SexFS offers researchers a reliable and valid set of tools to measure self-reported sexual function and satisfaction among diverse men and women. The measures are customizable; researchers can select the relevant domains and items comprising those domains for their study.

Authors
Flynn, KE; Lin, L; Cyranowski, JM; Reeve, BB; Reese, JB; Jeffery, DD; Smith, AW; Porter, LS; Dombeck, CB; Bruner, DW; Keefe, FJ; Weinfurt, KP
MLA Citation
Flynn, KE, Lin, L, Cyranowski, JM, Reeve, BB, Reese, JB, Jeffery, DD, Smith, AW, Porter, LS, Dombeck, CB, Bruner, DW, Keefe, FJ, and Weinfurt, KP. "Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer." The journal of sexual medicine 10 Suppl 1 (February 2013): 43-52.
PMID
23387911
Source
epmc
Published In
The Journal of Sexual Medicine
Volume
10 Suppl 1
Publish Date
2013
Start Page
43
End Page
52
DOI
10.1111/j.1743-6109.2012.02995.x

Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer.

We describe the development and validation of the Patient-Reported Outcomes Measurement Information System(®) Sexual Function and Satisfaction (PROMIS(®) SexFS; National Institutes of Health) measures, version 1.0, for cancer populations.To develop a customizable self-report measure of sexual function and satisfaction as part of the U.S. National Institutes of Health PROMIS Network.Our multidisciplinary working group followed a comprehensive protocol for developing psychometrically robust patient-reported outcome measures including qualitative (scale development) and quantitative (psychometric evaluation) development. We performed an extensive literature review, conducted 16 focus groups with cancer patients and multiple discussions with clinicians, and evaluated candidate items in cognitive testing with patients. We administered items to 819 cancer patients. Items were calibrated using item-response theory and evaluated for reliability and validity.The PROMIS SexFS measures, version 1.0, include 81 items in 11 domains: Interest in Sexual Activity, Lubrication, Vaginal Discomfort, Erectile Function, Global Satisfaction with Sex Life, Orgasm, Anal Discomfort, Therapeutic Aids, Sexual Activities, Interfering Factors, and Screener Questions.In addition to content validity (patients indicate that items cover important aspects of their experiences) and face validity (patients indicate that items measure sexual function and satisfaction), the measure shows evidence for discriminant validity (domains discriminate between groups expected to be different) and convergent validity (strong correlations between scores on PROMIS and scores on conceptually similar older measures of sexual function), as well as favorable test-retest reliability among people not expected to change (interclass correlations from two administrations of the instrument, 1 month apart).The PROMIS SexFS offers researchers a reliable and valid set of tools to measure self-reported sexual function and satisfaction among diverse men and women. The measures are customizable; researchers can select the relevant domains and items comprising those domains for their study.

Authors
Flynn, KE; Lin, L; Cyranowski, JM; Reeve, BB; Reese, JB; Jeffery, DD; Smith, AW; Porter, LS; Dombeck, CB; Bruner, DW; Keefe, FJ; Weinfurt, KP
MLA Citation
Flynn, KE, Lin, L, Cyranowski, JM, Reeve, BB, Reese, JB, Jeffery, DD, Smith, AW, Porter, LS, Dombeck, CB, Bruner, DW, Keefe, FJ, and Weinfurt, KP. "Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer." The journal of sexual medicine 10 Suppl 1 (February 2013): 43-52.
PMID
23387911
Source
epmc
Published In
The Journal of Sexual Medicine
Volume
10 Suppl 1
Publish Date
2013
Start Page
43
End Page
52
DOI
10.1111/j.1743-6109.2012.02995.x

Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer.

We describe the development and validation of the Patient-Reported Outcomes Measurement Information System(®) Sexual Function and Satisfaction (PROMIS(®) SexFS; National Institutes of Health) measures, version 1.0, for cancer populations.To develop a customizable self-report measure of sexual function and satisfaction as part of the U.S. National Institutes of Health PROMIS Network.Our multidisciplinary working group followed a comprehensive protocol for developing psychometrically robust patient-reported outcome measures including qualitative (scale development) and quantitative (psychometric evaluation) development. We performed an extensive literature review, conducted 16 focus groups with cancer patients and multiple discussions with clinicians, and evaluated candidate items in cognitive testing with patients. We administered items to 819 cancer patients. Items were calibrated using item-response theory and evaluated for reliability and validity.The PROMIS SexFS measures, version 1.0, include 81 items in 11 domains: Interest in Sexual Activity, Lubrication, Vaginal Discomfort, Erectile Function, Global Satisfaction with Sex Life, Orgasm, Anal Discomfort, Therapeutic Aids, Sexual Activities, Interfering Factors, and Screener Questions.In addition to content validity (patients indicate that items cover important aspects of their experiences) and face validity (patients indicate that items measure sexual function and satisfaction), the measure shows evidence for discriminant validity (domains discriminate between groups expected to be different) and convergent validity (strong correlations between scores on PROMIS and scores on conceptually similar older measures of sexual function), as well as favorable test-retest reliability among people not expected to change (interclass correlations from two administrations of the instrument, 1 month apart).The PROMIS SexFS offers researchers a reliable and valid set of tools to measure self-reported sexual function and satisfaction among diverse men and women. The measures are customizable; researchers can select the relevant domains and items comprising those domains for their study.

Authors
Flynn, KE; Lin, L; Cyranowski, JM; Reeve, BB; Reese, JB; Jeffery, DD; Smith, AW; Porter, LS; Dombeck, CB; Bruner, DW; Keefe, FJ; Weinfurt, KP
MLA Citation
Flynn, KE, Lin, L, Cyranowski, JM, Reeve, BB, Reese, JB, Jeffery, DD, Smith, AW, Porter, LS, Dombeck, CB, Bruner, DW, Keefe, FJ, and Weinfurt, KP. "Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer." J Sex Med 10 Suppl 1 (February 2013): 43-52.
PMID
23387911
Source
pubmed
Published In
The Journal of Sexual Medicine
Volume
10 Suppl 1
Publish Date
2013
Start Page
43
End Page
52
DOI
10.1111/j.1743-6109.2012.02995.x

Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer.

We describe the development and validation of the Patient-Reported Outcomes Measurement Information System(®) Sexual Function and Satisfaction (PROMIS(®) SexFS; National Institutes of Health) measures, version 1.0, for cancer populations.To develop a customizable self-report measure of sexual function and satisfaction as part of the U.S. National Institutes of Health PROMIS Network.Our multidisciplinary working group followed a comprehensive protocol for developing psychometrically robust patient-reported outcome measures including qualitative (scale development) and quantitative (psychometric evaluation) development. We performed an extensive literature review, conducted 16 focus groups with cancer patients and multiple discussions with clinicians, and evaluated candidate items in cognitive testing with patients. We administered items to 819 cancer patients. Items were calibrated using item-response theory and evaluated for reliability and validity.The PROMIS SexFS measures, version 1.0, include 81 items in 11 domains: Interest in Sexual Activity, Lubrication, Vaginal Discomfort, Erectile Function, Global Satisfaction with Sex Life, Orgasm, Anal Discomfort, Therapeutic Aids, Sexual Activities, Interfering Factors, and Screener Questions.In addition to content validity (patients indicate that items cover important aspects of their experiences) and face validity (patients indicate that items measure sexual function and satisfaction), the measure shows evidence for discriminant validity (domains discriminate between groups expected to be different) and convergent validity (strong correlations between scores on PROMIS and scores on conceptually similar older measures of sexual function), as well as favorable test-retest reliability among people not expected to change (interclass correlations from two administrations of the instrument, 1 month apart).The PROMIS SexFS offers researchers a reliable and valid set of tools to measure self-reported sexual function and satisfaction among diverse men and women. The measures are customizable; researchers can select the relevant domains and items comprising those domains for their study.

Authors
Flynn, KE; Lin, L; Cyranowski, JM; Reeve, BB; Reese, JB; Jeffery, DD; Smith, AW; Porter, LS; Dombeck, CB; Bruner, DW; Keefe, FJ; Weinfurt, KP
MLA Citation
Flynn, KE, Lin, L, Cyranowski, JM, Reeve, BB, Reese, JB, Jeffery, DD, Smith, AW, Porter, LS, Dombeck, CB, Bruner, DW, Keefe, FJ, and Weinfurt, KP. "Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer." J Sex Med 10 Suppl 1 (February 2013): 43-52.
PMID
23387911
Source
pubmed
Published In
The Journal of Sexual Medicine
Volume
10 Suppl 1
Publish Date
2013
Start Page
43
End Page
52
DOI
10.1111/j.1743-6109.2012.02995.x

Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer.

We describe the development and validation of the Patient-Reported Outcomes Measurement Information System(®) Sexual Function and Satisfaction (PROMIS(®) SexFS; National Institutes of Health) measures, version 1.0, for cancer populations.To develop a customizable self-report measure of sexual function and satisfaction as part of the U.S. National Institutes of Health PROMIS Network.Our multidisciplinary working group followed a comprehensive protocol for developing psychometrically robust patient-reported outcome measures including qualitative (scale development) and quantitative (psychometric evaluation) development. We performed an extensive literature review, conducted 16 focus groups with cancer patients and multiple discussions with clinicians, and evaluated candidate items in cognitive testing with patients. We administered items to 819 cancer patients. Items were calibrated using item-response theory and evaluated for reliability and validity.The PROMIS SexFS measures, version 1.0, include 81 items in 11 domains: Interest in Sexual Activity, Lubrication, Vaginal Discomfort, Erectile Function, Global Satisfaction with Sex Life, Orgasm, Anal Discomfort, Therapeutic Aids, Sexual Activities, Interfering Factors, and Screener Questions.In addition to content validity (patients indicate that items cover important aspects of their experiences) and face validity (patients indicate that items measure sexual function and satisfaction), the measure shows evidence for discriminant validity (domains discriminate between groups expected to be different) and convergent validity (strong correlations between scores on PROMIS and scores on conceptually similar older measures of sexual function), as well as favorable test-retest reliability among people not expected to change (interclass correlations from two administrations of the instrument, 1 month apart).The PROMIS SexFS offers researchers a reliable and valid set of tools to measure self-reported sexual function and satisfaction among diverse men and women. The measures are customizable; researchers can select the relevant domains and items comprising those domains for their study.

Authors
Flynn, KE; Lin, L; Cyranowski, JM; Reeve, BB; Reese, JB; Jeffery, DD; Smith, AW; Porter, LS; Dombeck, CB; Bruner, DW; Keefe, FJ; Weinfurt, KP
MLA Citation
Flynn, KE, Lin, L, Cyranowski, JM, Reeve, BB, Reese, JB, Jeffery, DD, Smith, AW, Porter, LS, Dombeck, CB, Bruner, DW, Keefe, FJ, and Weinfurt, KP. "Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer." J Sex Med 10 Suppl 1 (February 2013): 43-52.
PMID
23387911
Source
pubmed
Published In
The Journal of Sexual Medicine
Volume
10 Suppl 1
Publish Date
2013
Start Page
43
End Page
52
DOI
10.1111/j.1743-6109.2012.02995.x

Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer.

We describe the development and validation of the Patient-Reported Outcomes Measurement Information System(®) Sexual Function and Satisfaction (PROMIS(®) SexFS; National Institutes of Health) measures, version 1.0, for cancer populations.To develop a customizable self-report measure of sexual function and satisfaction as part of the U.S. National Institutes of Health PROMIS Network.Our multidisciplinary working group followed a comprehensive protocol for developing psychometrically robust patient-reported outcome measures including qualitative (scale development) and quantitative (psychometric evaluation) development. We performed an extensive literature review, conducted 16 focus groups with cancer patients and multiple discussions with clinicians, and evaluated candidate items in cognitive testing with patients. We administered items to 819 cancer patients. Items were calibrated using item-response theory and evaluated for reliability and validity.The PROMIS SexFS measures, version 1.0, include 81 items in 11 domains: Interest in Sexual Activity, Lubrication, Vaginal Discomfort, Erectile Function, Global Satisfaction with Sex Life, Orgasm, Anal Discomfort, Therapeutic Aids, Sexual Activities, Interfering Factors, and Screener Questions.In addition to content validity (patients indicate that items cover important aspects of their experiences) and face validity (patients indicate that items measure sexual function and satisfaction), the measure shows evidence for discriminant validity (domains discriminate between groups expected to be different) and convergent validity (strong correlations between scores on PROMIS and scores on conceptually similar older measures of sexual function), as well as favorable test-retest reliability among people not expected to change (interclass correlations from two administrations of the instrument, 1 month apart).The PROMIS SexFS offers researchers a reliable and valid set of tools to measure self-reported sexual function and satisfaction among diverse men and women. The measures are customizable; researchers can select the relevant domains and items comprising those domains for their study.

Authors
Flynn, KE; Lin, L; Cyranowski, JM; Reeve, BB; Reese, JB; Jeffery, DD; Smith, AW; Porter, LS; Dombeck, CB; Bruner, DW; Keefe, FJ; Weinfurt, KP
MLA Citation
Flynn, KE, Lin, L, Cyranowski, JM, Reeve, BB, Reese, JB, Jeffery, DD, Smith, AW, Porter, LS, Dombeck, CB, Bruner, DW, Keefe, FJ, and Weinfurt, KP. "Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer." J Sex Med 10 Suppl 1 (February 2013): 43-52.
PMID
23387911
Source
pubmed
Published In
The Journal of Sexual Medicine
Volume
10 Suppl 1
Publish Date
2013
Start Page
43
End Page
52
DOI
10.1111/j.1743-6109.2012.02995.x

Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer.

We describe the development and validation of the Patient-Reported Outcomes Measurement Information System(®) Sexual Function and Satisfaction (PROMIS(®) SexFS; National Institutes of Health) measures, version 1.0, for cancer populations.To develop a customizable self-report measure of sexual function and satisfaction as part of the U.S. National Institutes of Health PROMIS Network.Our multidisciplinary working group followed a comprehensive protocol for developing psychometrically robust patient-reported outcome measures including qualitative (scale development) and quantitative (psychometric evaluation) development. We performed an extensive literature review, conducted 16 focus groups with cancer patients and multiple discussions with clinicians, and evaluated candidate items in cognitive testing with patients. We administered items to 819 cancer patients. Items were calibrated using item-response theory and evaluated for reliability and validity.The PROMIS SexFS measures, version 1.0, include 81 items in 11 domains: Interest in Sexual Activity, Lubrication, Vaginal Discomfort, Erectile Function, Global Satisfaction with Sex Life, Orgasm, Anal Discomfort, Therapeutic Aids, Sexual Activities, Interfering Factors, and Screener Questions.In addition to content validity (patients indicate that items cover important aspects of their experiences) and face validity (patients indicate that items measure sexual function and satisfaction), the measure shows evidence for discriminant validity (domains discriminate between groups expected to be different) and convergent validity (strong correlations between scores on PROMIS and scores on conceptually similar older measures of sexual function), as well as favorable test-retest reliability among people not expected to change (interclass correlations from two administrations of the instrument, 1 month apart).The PROMIS SexFS offers researchers a reliable and valid set of tools to measure self-reported sexual function and satisfaction among diverse men and women. The measures are customizable; researchers can select the relevant domains and items comprising those domains for their study.

Authors
Flynn, KE; Lin, L; Cyranowski, JM; Reeve, BB; Reese, JB; Jeffery, DD; Smith, AW; Porter, LS; Dombeck, CB; Bruner, DW; Keefe, FJ; Weinfurt, KP
MLA Citation
Flynn, KE, Lin, L, Cyranowski, JM, Reeve, BB, Reese, JB, Jeffery, DD, Smith, AW, Porter, LS, Dombeck, CB, Bruner, DW, Keefe, FJ, and Weinfurt, KP. "Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer." The journal of sexual medicine 10 Suppl 1 (February 2013): 43-52.
PMID
23387911
Source
pubmed
Published In
The Journal of Sexual Medicine
Volume
10 Suppl 1
Publish Date
2013
Start Page
43
End Page
52
DOI
10.1111/j.1743-6109.2012.02995.x

Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer.

We describe the development and validation of the Patient-Reported Outcomes Measurement Information System(®) Sexual Function and Satisfaction (PROMIS(®) SexFS; National Institutes of Health) measures, version 1.0, for cancer populations.To develop a customizable self-report measure of sexual function and satisfaction as part of the U.S. National Institutes of Health PROMIS Network.Our multidisciplinary working group followed a comprehensive protocol for developing psychometrically robust patient-reported outcome measures including qualitative (scale development) and quantitative (psychometric evaluation) development. We performed an extensive literature review, conducted 16 focus groups with cancer patients and multiple discussions with clinicians, and evaluated candidate items in cognitive testing with patients. We administered items to 819 cancer patients. Items were calibrated using item-response theory and evaluated for reliability and validity.The PROMIS SexFS measures, version 1.0, include 81 items in 11 domains: Interest in Sexual Activity, Lubrication, Vaginal Discomfort, Erectile Function, Global Satisfaction with Sex Life, Orgasm, Anal Discomfort, Therapeutic Aids, Sexual Activities, Interfering Factors, and Screener Questions.In addition to content validity (patients indicate that items cover important aspects of their experiences) and face validity (patients indicate that items measure sexual function and satisfaction), the measure shows evidence for discriminant validity (domains discriminate between groups expected to be different) and convergent validity (strong correlations between scores on PROMIS and scores on conceptually similar older measures of sexual function), as well as favorable test-retest reliability among people not expected to change (interclass correlations from two administrations of the instrument, 1 month apart).The PROMIS SexFS offers researchers a reliable and valid set of tools to measure self-reported sexual function and satisfaction among diverse men and women. The measures are customizable; researchers can select the relevant domains and items comprising those domains for their study.

Authors
Flynn, KE; Lin, L; Cyranowski, JM; Reeve, BB; Reese, JB; Jeffery, DD; Smith, AW; Porter, LS; Dombeck, CB; Bruner, DW; Keefe, FJ; Weinfurt, KP
MLA Citation
Flynn, KE, Lin, L, Cyranowski, JM, Reeve, BB, Reese, JB, Jeffery, DD, Smith, AW, Porter, LS, Dombeck, CB, Bruner, DW, Keefe, FJ, and Weinfurt, KP. "Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer." The journal of sexual medicine 10 Suppl 1 (February 2013): 43-52.
PMID
23387911
Source
pubmed
Published In
The Journal of Sexual Medicine
Volume
10 Suppl 1
Publish Date
2013
Start Page
43
End Page
52
DOI
10.1111/j.1743-6109.2012.02995.x

Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer.

We describe the development and validation of the Patient-Reported Outcomes Measurement Information System(®) Sexual Function and Satisfaction (PROMIS(®) SexFS; National Institutes of Health) measures, version 1.0, for cancer populations.To develop a customizable self-report measure of sexual function and satisfaction as part of the U.S. National Institutes of Health PROMIS Network.Our multidisciplinary working group followed a comprehensive protocol for developing psychometrically robust patient-reported outcome measures including qualitative (scale development) and quantitative (psychometric evaluation) development. We performed an extensive literature review, conducted 16 focus groups with cancer patients and multiple discussions with clinicians, and evaluated candidate items in cognitive testing with patients. We administered items to 819 cancer patients. Items were calibrated using item-response theory and evaluated for reliability and validity.The PROMIS SexFS measures, version 1.0, include 81 items in 11 domains: Interest in Sexual Activity, Lubrication, Vaginal Discomfort, Erectile Function, Global Satisfaction with Sex Life, Orgasm, Anal Discomfort, Therapeutic Aids, Sexual Activities, Interfering Factors, and Screener Questions.In addition to content validity (patients indicate that items cover important aspects of their experiences) and face validity (patients indicate that items measure sexual function and satisfaction), the measure shows evidence for discriminant validity (domains discriminate between groups expected to be different) and convergent validity (strong correlations between scores on PROMIS and scores on conceptually similar older measures of sexual function), as well as favorable test-retest reliability among people not expected to change (interclass correlations from two administrations of the instrument, 1 month apart).The PROMIS SexFS offers researchers a reliable and valid set of tools to measure self-reported sexual function and satisfaction among diverse men and women. The measures are customizable; researchers can select the relevant domains and items comprising those domains for their study.

Authors
Flynn, KE; Lin, L; Cyranowski, JM; Reeve, BB; Reese, JB; Jeffery, DD; Smith, AW; Porter, LS; Dombeck, CB; Bruner, DW; Keefe, FJ; Weinfurt, KP
MLA Citation
Flynn, KE, Lin, L, Cyranowski, JM, Reeve, BB, Reese, JB, Jeffery, DD, Smith, AW, Porter, LS, Dombeck, CB, Bruner, DW, Keefe, FJ, and Weinfurt, KP. "Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer." The journal of sexual medicine 10 Suppl 1 (February 2013): 43-52.
PMID
23387911
Source
pubmed
Published In
The Journal of Sexual Medicine
Volume
10 Suppl 1
Publish Date
2013
Start Page
43
End Page
52
DOI
10.1111/j.1743-6109.2012.02995.x

Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer.

We describe the development and validation of the Patient-Reported Outcomes Measurement Information System(®) Sexual Function and Satisfaction (PROMIS(®) SexFS; National Institutes of Health) measures, version 1.0, for cancer populations.To develop a customizable self-report measure of sexual function and satisfaction as part of the U.S. National Institutes of Health PROMIS Network.Our multidisciplinary working group followed a comprehensive protocol for developing psychometrically robust patient-reported outcome measures including qualitative (scale development) and quantitative (psychometric evaluation) development. We performed an extensive literature review, conducted 16 focus groups with cancer patients and multiple discussions with clinicians, and evaluated candidate items in cognitive testing with patients. We administered items to 819 cancer patients. Items were calibrated using item-response theory and evaluated for reliability and validity.The PROMIS SexFS measures, version 1.0, include 81 items in 11 domains: Interest in Sexual Activity, Lubrication, Vaginal Discomfort, Erectile Function, Global Satisfaction with Sex Life, Orgasm, Anal Discomfort, Therapeutic Aids, Sexual Activities, Interfering Factors, and Screener Questions.In addition to content validity (patients indicate that items cover important aspects of their experiences) and face validity (patients indicate that items measure sexual function and satisfaction), the measure shows evidence for discriminant validity (domains discriminate between groups expected to be different) and convergent validity (strong correlations between scores on PROMIS and scores on conceptually similar older measures of sexual function), as well as favorable test-retest reliability among people not expected to change (interclass correlations from two administrations of the instrument, 1 month apart).The PROMIS SexFS offers researchers a reliable and valid set of tools to measure self-reported sexual function and satisfaction among diverse men and women. The measures are customizable; researchers can select the relevant domains and items comprising those domains for their study.

Authors
Flynn, KE; Lin, L; Cyranowski, JM; Reeve, BB; Reese, JB; Jeffery, DD; Smith, AW; Porter, LS; Dombeck, CB; Bruner, DW; Keefe, FJ; Weinfurt, KP
MLA Citation
Flynn, KE, Lin, L, Cyranowski, JM, Reeve, BB, Reese, JB, Jeffery, DD, Smith, AW, Porter, LS, Dombeck, CB, Bruner, DW, Keefe, FJ, and Weinfurt, KP. "Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer." The journal of sexual medicine 10 Suppl 1 (February 2013): 43-52.
PMID
23387911
Source
pubmed
Published In
The Journal of Sexual Medicine
Volume
10 Suppl 1
Publish Date
2013
Start Page
43
End Page
52
DOI
10.1111/j.1743-6109.2012.02995.x

Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer.

We describe the development and validation of the Patient-Reported Outcomes Measurement Information System(®) Sexual Function and Satisfaction (PROMIS(®) SexFS; National Institutes of Health) measures, version 1.0, for cancer populations.To develop a customizable self-report measure of sexual function and satisfaction as part of the U.S. National Institutes of Health PROMIS Network.Our multidisciplinary working group followed a comprehensive protocol for developing psychometrically robust patient-reported outcome measures including qualitative (scale development) and quantitative (psychometric evaluation) development. We performed an extensive literature review, conducted 16 focus groups with cancer patients and multiple discussions with clinicians, and evaluated candidate items in cognitive testing with patients. We administered items to 819 cancer patients. Items were calibrated using item-response theory and evaluated for reliability and validity.The PROMIS SexFS measures, version 1.0, include 81 items in 11 domains: Interest in Sexual Activity, Lubrication, Vaginal Discomfort, Erectile Function, Global Satisfaction with Sex Life, Orgasm, Anal Discomfort, Therapeutic Aids, Sexual Activities, Interfering Factors, and Screener Questions.In addition to content validity (patients indicate that items cover important aspects of their experiences) and face validity (patients indicate that items measure sexual function and satisfaction), the measure shows evidence for discriminant validity (domains discriminate between groups expected to be different) and convergent validity (strong correlations between scores on PROMIS and scores on conceptually similar older measures of sexual function), as well as favorable test-retest reliability among people not expected to change (interclass correlations from two administrations of the instrument, 1 month apart).The PROMIS SexFS offers researchers a reliable and valid set of tools to measure self-reported sexual function and satisfaction among diverse men and women. The measures are customizable; researchers can select the relevant domains and items comprising those domains for their study.

Authors
Flynn, KE; Lin, L; Cyranowski, JM; Reeve, BB; Reese, JB; Jeffery, DD; Smith, AW; Porter, LS; Dombeck, CB; Bruner, DW; Keefe, FJ; Weinfurt, KP
MLA Citation
Flynn, KE, Lin, L, Cyranowski, JM, Reeve, BB, Reese, JB, Jeffery, DD, Smith, AW, Porter, LS, Dombeck, CB, Bruner, DW, Keefe, FJ, and Weinfurt, KP. "Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer." J Sex Med 10 Suppl 1 (February 2013): 43-52.
PMID
23387911
Source
pubmed
Published In
The Journal of Sexual Medicine
Volume
10 Suppl 1
Publish Date
2013
Start Page
43
End Page
52
DOI
10.1111/j.1743-6109.2012.02995.x

Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer.

We describe the development and validation of the Patient-Reported Outcomes Measurement Information System(®) Sexual Function and Satisfaction (PROMIS(®) SexFS; National Institutes of Health) measures, version 1.0, for cancer populations.To develop a customizable self-report measure of sexual function and satisfaction as part of the U.S. National Institutes of Health PROMIS Network.Our multidisciplinary working group followed a comprehensive protocol for developing psychometrically robust patient-reported outcome measures including qualitative (scale development) and quantitative (psychometric evaluation) development. We performed an extensive literature review, conducted 16 focus groups with cancer patients and multiple discussions with clinicians, and evaluated candidate items in cognitive testing with patients. We administered items to 819 cancer patients. Items were calibrated using item-response theory and evaluated for reliability and validity.The PROMIS SexFS measures, version 1.0, include 81 items in 11 domains: Interest in Sexual Activity, Lubrication, Vaginal Discomfort, Erectile Function, Global Satisfaction with Sex Life, Orgasm, Anal Discomfort, Therapeutic Aids, Sexual Activities, Interfering Factors, and Screener Questions.In addition to content validity (patients indicate that items cover important aspects of their experiences) and face validity (patients indicate that items measure sexual function and satisfaction), the measure shows evidence for discriminant validity (domains discriminate between groups expected to be different) and convergent validity (strong correlations between scores on PROMIS and scores on conceptually similar older measures of sexual function), as well as favorable test-retest reliability among people not expected to change (interclass correlations from two administrations of the instrument, 1 month apart).The PROMIS SexFS offers researchers a reliable and valid set of tools to measure self-reported sexual function and satisfaction among diverse men and women. The measures are customizable; researchers can select the relevant domains and items comprising those domains for their study.

Authors
Flynn, KE; Lin, L; Cyranowski, JM; Reeve, BB; Reese, JB; Jeffery, DD; Smith, AW; Porter, LS; Dombeck, CB; Bruner, DW; Keefe, FJ; Weinfurt, KP
MLA Citation
Flynn, KE, Lin, L, Cyranowski, JM, Reeve, BB, Reese, JB, Jeffery, DD, Smith, AW, Porter, LS, Dombeck, CB, Bruner, DW, Keefe, FJ, and Weinfurt, KP. "Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer." J Sex Med 10 Suppl 1 (February 2013): 43-52.
PMID
23387911
Source
pubmed
Published In
The Journal of Sexual Medicine
Volume
10 Suppl 1
Publish Date
2013
Start Page
43
End Page
52
DOI
10.1111/j.1743-6109.2012.02995.x

Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer.

We describe the development and validation of the Patient-Reported Outcomes Measurement Information System(®) Sexual Function and Satisfaction (PROMIS(®) SexFS; National Institutes of Health) measures, version 1.0, for cancer populations.To develop a customizable self-report measure of sexual function and satisfaction as part of the U.S. National Institutes of Health PROMIS Network.Our multidisciplinary working group followed a comprehensive protocol for developing psychometrically robust patient-reported outcome measures including qualitative (scale development) and quantitative (psychometric evaluation) development. We performed an extensive literature review, conducted 16 focus groups with cancer patients and multiple discussions with clinicians, and evaluated candidate items in cognitive testing with patients. We administered items to 819 cancer patients. Items were calibrated using item-response theory and evaluated for reliability and validity.The PROMIS SexFS measures, version 1.0, include 81 items in 11 domains: Interest in Sexual Activity, Lubrication, Vaginal Discomfort, Erectile Function, Global Satisfaction with Sex Life, Orgasm, Anal Discomfort, Therapeutic Aids, Sexual Activities, Interfering Factors, and Screener Questions.In addition to content validity (patients indicate that items cover important aspects of their experiences) and face validity (patients indicate that items measure sexual function and satisfaction), the measure shows evidence for discriminant validity (domains discriminate between groups expected to be different) and convergent validity (strong correlations between scores on PROMIS and scores on conceptually similar older measures of sexual function), as well as favorable test-retest reliability among people not expected to change (interclass correlations from two administrations of the instrument, 1 month apart).The PROMIS SexFS offers researchers a reliable and valid set of tools to measure self-reported sexual function and satisfaction among diverse men and women. The measures are customizable; researchers can select the relevant domains and items comprising those domains for their study.

Authors
Flynn, KE; Lin, L; Cyranowski, JM; Reeve, BB; Reese, JB; Jeffery, DD; Smith, AW; Porter, LS; Dombeck, CB; Bruner, DW; Keefe, FJ; Weinfurt, KP
MLA Citation
Flynn, KE, Lin, L, Cyranowski, JM, Reeve, BB, Reese, JB, Jeffery, DD, Smith, AW, Porter, LS, Dombeck, CB, Bruner, DW, Keefe, FJ, and Weinfurt, KP. "Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer." J Sex Med 10 Suppl 1 (February 2013): 43-52.
PMID
23387911
Source
pubmed
Published In
The Journal of Sexual Medicine
Volume
10 Suppl 1
Publish Date
2013
Start Page
43
End Page
52
DOI
10.1111/j.1743-6109.2012.02995.x

Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer.

We describe the development and validation of the Patient-Reported Outcomes Measurement Information System(®) Sexual Function and Satisfaction (PROMIS(®) SexFS; National Institutes of Health) measures, version 1.0, for cancer populations.To develop a customizable self-report measure of sexual function and satisfaction as part of the U.S. National Institutes of Health PROMIS Network.Our multidisciplinary working group followed a comprehensive protocol for developing psychometrically robust patient-reported outcome measures including qualitative (scale development) and quantitative (psychometric evaluation) development. We performed an extensive literature review, conducted 16 focus groups with cancer patients and multiple discussions with clinicians, and evaluated candidate items in cognitive testing with patients. We administered items to 819 cancer patients. Items were calibrated using item-response theory and evaluated for reliability and validity.The PROMIS SexFS measures, version 1.0, include 81 items in 11 domains: Interest in Sexual Activity, Lubrication, Vaginal Discomfort, Erectile Function, Global Satisfaction with Sex Life, Orgasm, Anal Discomfort, Therapeutic Aids, Sexual Activities, Interfering Factors, and Screener Questions.In addition to content validity (patients indicate that items cover important aspects of their experiences) and face validity (patients indicate that items measure sexual function and satisfaction), the measure shows evidence for discriminant validity (domains discriminate between groups expected to be different) and convergent validity (strong correlations between scores on PROMIS and scores on conceptually similar older measures of sexual function), as well as favorable test-retest reliability among people not expected to change (interclass correlations from two administrations of the instrument, 1 month apart).The PROMIS SexFS offers researchers a reliable and valid set of tools to measure self-reported sexual function and satisfaction among diverse men and women. The measures are customizable; researchers can select the relevant domains and items comprising those domains for their study.

Authors
Flynn, KE; Lin, L; Cyranowski, JM; Reeve, BB; Reese, JB; Jeffery, DD; Smith, AW; Porter, LS; Dombeck, CB; Bruner, DW; Keefe, FJ; Weinfurt, KP
MLA Citation
Flynn, KE, Lin, L, Cyranowski, JM, Reeve, BB, Reese, JB, Jeffery, DD, Smith, AW, Porter, LS, Dombeck, CB, Bruner, DW, Keefe, FJ, and Weinfurt, KP. "Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer." J Sex Med 10 Suppl 1 (February 2013): 43-52.
PMID
23387911
Source
pubmed
Published In
The Journal of Sexual Medicine
Volume
10 Suppl 1
Publish Date
2013
Start Page
43
End Page
52
DOI
10.1111/j.1743-6109.2012.02995.x

Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer.

We describe the development and validation of the Patient-Reported Outcomes Measurement Information System(®) Sexual Function and Satisfaction (PROMIS(®) SexFS; National Institutes of Health) measures, version 1.0, for cancer populations.To develop a customizable self-report measure of sexual function and satisfaction as part of the U.S. National Institutes of Health PROMIS Network.Our multidisciplinary working group followed a comprehensive protocol for developing psychometrically robust patient-reported outcome measures including qualitative (scale development) and quantitative (psychometric evaluation) development. We performed an extensive literature review, conducted 16 focus groups with cancer patients and multiple discussions with clinicians, and evaluated candidate items in cognitive testing with patients. We administered items to 819 cancer patients. Items were calibrated using item-response theory and evaluated for reliability and validity.The PROMIS SexFS measures, version 1.0, include 81 items in 11 domains: Interest in Sexual Activity, Lubrication, Vaginal Discomfort, Erectile Function, Global Satisfaction with Sex Life, Orgasm, Anal Discomfort, Therapeutic Aids, Sexual Activities, Interfering Factors, and Screener Questions.In addition to content validity (patients indicate that items cover important aspects of their experiences) and face validity (patients indicate that items measure sexual function and satisfaction), the measure shows evidence for discriminant validity (domains discriminate between groups expected to be different) and convergent validity (strong correlations between scores on PROMIS and scores on conceptually similar older measures of sexual function), as well as favorable test-retest reliability among people not expected to change (interclass correlations from two administrations of the instrument, 1 month apart).The PROMIS SexFS offers researchers a reliable and valid set of tools to measure self-reported sexual function and satisfaction among diverse men and women. The measures are customizable; researchers can select the relevant domains and items comprising those domains for their study.

Authors
Flynn, KE; Lin, L; Cyranowski, JM; Reeve, BB; Reese, JB; Jeffery, DD; Smith, AW; Porter, LS; Dombeck, CB; Bruner, DW; Keefe, FJ; Weinfurt, KP
MLA Citation
Flynn, KE, Lin, L, Cyranowski, JM, Reeve, BB, Reese, JB, Jeffery, DD, Smith, AW, Porter, LS, Dombeck, CB, Bruner, DW, Keefe, FJ, and Weinfurt, KP. "Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer." The journal of sexual medicine 10 Suppl 1 (February 2013): 43-52.
PMID
23387911
Source
pubmed
Published In
The Journal of Sexual Medicine
Volume
10 Suppl 1
Publish Date
2013
Start Page
43
End Page
52
DOI
10.1111/j.1743-6109.2012.02995.x

Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer.

We describe the development and validation of the Patient-Reported Outcomes Measurement Information System(®) Sexual Function and Satisfaction (PROMIS(®) SexFS; National Institutes of Health) measures, version 1.0, for cancer populations.To develop a customizable self-report measure of sexual function and satisfaction as part of the U.S. National Institutes of Health PROMIS Network.Our multidisciplinary working group followed a comprehensive protocol for developing psychometrically robust patient-reported outcome measures including qualitative (scale development) and quantitative (psychometric evaluation) development. We performed an extensive literature review, conducted 16 focus groups with cancer patients and multiple discussions with clinicians, and evaluated candidate items in cognitive testing with patients. We administered items to 819 cancer patients. Items were calibrated using item-response theory and evaluated for reliability and validity.The PROMIS SexFS measures, version 1.0, include 81 items in 11 domains: Interest in Sexual Activity, Lubrication, Vaginal Discomfort, Erectile Function, Global Satisfaction with Sex Life, Orgasm, Anal Discomfort, Therapeutic Aids, Sexual Activities, Interfering Factors, and Screener Questions.In addition to content validity (patients indicate that items cover important aspects of their experiences) and face validity (patients indicate that items measure sexual function and satisfaction), the measure shows evidence for discriminant validity (domains discriminate between groups expected to be different) and convergent validity (strong correlations between scores on PROMIS and scores on conceptually similar older measures of sexual function), as well as favorable test-retest reliability among people not expected to change (interclass correlations from two administrations of the instrument, 1 month apart).The PROMIS SexFS offers researchers a reliable and valid set of tools to measure self-reported sexual function and satisfaction among diverse men and women. The measures are customizable; researchers can select the relevant domains and items comprising those domains for their study.

Authors
Flynn, KE; Lin, L; Cyranowski, JM; Reeve, BB; Reese, JB; Jeffery, DD; Smith, AW; Porter, LS; Dombeck, CB; Bruner, DW; Keefe, FJ; Weinfurt, KP
MLA Citation
Flynn, KE, Lin, L, Cyranowski, JM, Reeve, BB, Reese, JB, Jeffery, DD, Smith, AW, Porter, LS, Dombeck, CB, Bruner, DW, Keefe, FJ, and Weinfurt, KP. "Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer." The journal of sexual medicine 10 Suppl 1 (February 2013): 43-52.
PMID
23387911
Source
pubmed
Published In
The Journal of Sexual Medicine
Volume
10 Suppl 1
Publish Date
2013
Start Page
43
End Page
52
DOI
10.1111/j.1743-6109.2012.02995.x

Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer.

We describe the development and validation of the Patient-Reported Outcomes Measurement Information System(®) Sexual Function and Satisfaction (PROMIS(®) SexFS; National Institutes of Health) measures, version 1.0, for cancer populations.To develop a customizable self-report measure of sexual function and satisfaction as part of the U.S. National Institutes of Health PROMIS Network.Our multidisciplinary working group followed a comprehensive protocol for developing psychometrically robust patient-reported outcome measures including qualitative (scale development) and quantitative (psychometric evaluation) development. We performed an extensive literature review, conducted 16 focus groups with cancer patients and multiple discussions with clinicians, and evaluated candidate items in cognitive testing with patients. We administered items to 819 cancer patients. Items were calibrated using item-response theory and evaluated for reliability and validity.The PROMIS SexFS measures, version 1.0, include 81 items in 11 domains: Interest in Sexual Activity, Lubrication, Vaginal Discomfort, Erectile Function, Global Satisfaction with Sex Life, Orgasm, Anal Discomfort, Therapeutic Aids, Sexual Activities, Interfering Factors, and Screener Questions.In addition to content validity (patients indicate that items cover important aspects of their experiences) and face validity (patients indicate that items measure sexual function and satisfaction), the measure shows evidence for discriminant validity (domains discriminate between groups expected to be different) and convergent validity (strong correlations between scores on PROMIS and scores on conceptually similar older measures of sexual function), as well as favorable test-retest reliability among people not expected to change (interclass correlations from two administrations of the instrument, 1 month apart).The PROMIS SexFS offers researchers a reliable and valid set of tools to measure self-reported sexual function and satisfaction among diverse men and women. The measures are customizable; researchers can select the relevant domains and items comprising those domains for their study.

Authors
Flynn, KE; Lin, L; Cyranowski, JM; Reeve, BB; Reese, JB; Jeffery, DD; Smith, AW; Porter, LS; Dombeck, CB; Bruner, DW; Keefe, FJ; Weinfurt, KP
MLA Citation
Flynn, KE, Lin, L, Cyranowski, JM, Reeve, BB, Reese, JB, Jeffery, DD, Smith, AW, Porter, LS, Dombeck, CB, Bruner, DW, Keefe, FJ, and Weinfurt, KP. "Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer." The journal of sexual medicine 10 Suppl 1 (February 2013): 43-52.
PMID
23387911
Source
pubmed
Published In
The Journal of Sexual Medicine
Volume
10 Suppl 1
Publish Date
2013
Start Page
43
End Page
52
DOI
10.1111/j.1743-6109.2012.02995.x

Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer.

We describe the development and validation of the Patient-Reported Outcomes Measurement Information System(®) Sexual Function and Satisfaction (PROMIS(®) SexFS; National Institutes of Health) measures, version 1.0, for cancer populations.To develop a customizable self-report measure of sexual function and satisfaction as part of the U.S. National Institutes of Health PROMIS Network.Our multidisciplinary working group followed a comprehensive protocol for developing psychometrically robust patient-reported outcome measures including qualitative (scale development) and quantitative (psychometric evaluation) development. We performed an extensive literature review, conducted 16 focus groups with cancer patients and multiple discussions with clinicians, and evaluated candidate items in cognitive testing with patients. We administered items to 819 cancer patients. Items were calibrated using item-response theory and evaluated for reliability and validity.The PROMIS SexFS measures, version 1.0, include 81 items in 11 domains: Interest in Sexual Activity, Lubrication, Vaginal Discomfort, Erectile Function, Global Satisfaction with Sex Life, Orgasm, Anal Discomfort, Therapeutic Aids, Sexual Activities, Interfering Factors, and Screener Questions.In addition to content validity (patients indicate that items cover important aspects of their experiences) and face validity (patients indicate that items measure sexual function and satisfaction), the measure shows evidence for discriminant validity (domains discriminate between groups expected to be different) and convergent validity (strong correlations between scores on PROMIS and scores on conceptually similar older measures of sexual function), as well as favorable test-retest reliability among people not expected to change (interclass correlations from two administrations of the instrument, 1 month apart).The PROMIS SexFS offers researchers a reliable and valid set of tools to measure self-reported sexual function and satisfaction among diverse men and women. The measures are customizable; researchers can select the relevant domains and items comprising those domains for their study.

Authors
Flynn, KE; Lin, L; Cyranowski, JM; Reeve, BB; Reese, JB; Jeffery, DD; Smith, AW; Porter, LS; Dombeck, CB; Bruner, DW; Keefe, FJ; Weinfurt, KP
MLA Citation
Flynn, KE, Lin, L, Cyranowski, JM, Reeve, BB, Reese, JB, Jeffery, DD, Smith, AW, Porter, LS, Dombeck, CB, Bruner, DW, Keefe, FJ, and Weinfurt, KP. "Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer." The journal of sexual medicine 10 Suppl 1 (February 2013): 43-52.
PMID
23387911
Source
pubmed
Published In
The Journal of Sexual Medicine
Volume
10 Suppl 1
Publish Date
2013
Start Page
43
End Page
52
DOI
10.1111/j.1743-6109.2012.02995.x

Talking with patients about dying.

Authors
Weinfurt, KP; Kim, SY; Meropol, NJ
MLA Citation
Weinfurt, KP, Kim, SY, and Meropol, NJ. "Talking with patients about dying." N Engl J Med 368.5 (January 31, 2013): 479-. (Letter)
PMID
23363508
Source
pubmed
Published In
The New England journal of medicine
Volume
368
Issue
5
Publish Date
2013
Start Page
479
DOI
10.1056/NEJMc1214249#SA1

Using central IRBs for multicenter clinical trials in the United States.

Research institutions differ in their willingness to defer to a single, central institutional review board (IRB) for multicenter clinical trials, despite statements from the FDA, OHRP, and NIH in support of using central IRBs to improve the efficiency of conducting trials. The Clinical Trials Transformation Initiative (CTTI) supported this project to solicit current perceptions of barriers to the use of central IRBs and to formulate potential solutions. We held discussions with IRB experts, interviewed representatives of research institutions, and held an expert meeting with diverse stakeholder groups and thought leaders. We found that many perceived barriers relate to conflating responsibilities of the institution with the ethical review responsibilities of the IRB. We identified the need for concrete tools to help research institutions separate institutional responsibilities from ethical responsibilities required of the IRB. One such tool is a document we created that delineates these responsibilities and how they might be assigned to each entity, or, in some cases, both entities. This tool and project recommendations will be broadly disseminated to facilitate the use of central IRBs in multicenter trials. The ultimate goal is to increase the nation's capacity to efficiently conduct the large number of high-quality trials.

Authors
Flynn, KE; Hahn, CL; Kramer, JM; Check, DK; Dombeck, CB; Bang, S; Perlmutter, J; Khin-Maung-Gyi, FA; Weinfurt, KP
MLA Citation
Flynn, KE, Hahn, CL, Kramer, JM, Check, DK, Dombeck, CB, Bang, S, Perlmutter, J, Khin-Maung-Gyi, FA, and Weinfurt, KP. "Using central IRBs for multicenter clinical trials in the United States." PLoS One 8.1 (2013): e54999-.
PMID
23383026
Source
pubmed
Published In
PloS one
Volume
8
Issue
1
Publish Date
2013
Start Page
e54999
DOI
10.1371/journal.pone.0054999

Understanding What Participants in Empirical Bioethical Studies Mean: Historical Cautions From William James and Ludwig Wittgenstein

Methods from psychology are informing much empirical research in bioethics by helping to understand the thoughts, feelings, and beliefs of people as they relate to a variety of bioethical issues. This can lead to improvements in practice or policy only if the subjective mental states under study have been characterized accurately. In this article, I describe two cautions from the history of psychology concerning the accurate characterization of mental states that have significant implications for how we elicit and interpret data in empirical bioethical studies. Both make reference to tendencies of mind that can be difficult to combat and that are the cause of other more specific methodological errors. The first historical caution, William James's "psychologist's fallacy," warns against substituting the ethicist/researcher's point of view with that of the person under study. Failure to appreciate this essentially egocentric bias can result in asking people to report on things (e.g., probability of benefit from an experimental therapy) that are not a part of the person's experience in the same way they are a part of the researcher's worldview. The responses the person provides in such cases do not provide good information about his or her experience and so cannot be used to guide sound policy. The second historical caution is Wittgenstein's discursive perspective, which urges us to interpret the meaning of things said by a person in a research study by examining the function each utterance serves for the person. For example, one should avoid assuming that people respond to queries about understanding by simply describing their understanding. Instead, research participants might provide responses to achieve other goals, such as establishing a desired attitude in themselves. I suggest that both cautions can be addressed through careful qualitative investigation at the beginning of a research project. © 2013 Copyright Taylor and Francis Group, LLC.

Authors
Weinfurt, KP
MLA Citation
Weinfurt, KP. "Understanding What Participants in Empirical Bioethical Studies Mean: Historical Cautions From William James and Ludwig Wittgenstein." AJOB Primary Research 4.3 (2013): 49-54.
Source
scival
Published In
American Journal of Bioethics Primary Research
Volume
4
Issue
3
Publish Date
2013
Start Page
49
End Page
54
DOI
10.1080/21507716.2013.807893

Hemoglobin, exercise training, and health status in patients with chronic heart failure (from the HF-ACTION randomized controlled trial)

Anemia is common in patients with chronic heart failure (HF), with a prevalence ranging from 10% to 56%, and may be a risk factor for poor outcomes. Anemia in HF remains poorly understood, with significant gaps in its impact on health-related quality of life (HRQoL), with most studies in HF being retrospective or from registries. The purpose of this study was to explore the relation of hemoglobin (Hgb) with HRQoL and training-induced changes in HRQoL in a cohort of patients in Heart Failure: A Controlled Trial Investigating Outcomes of Exercise Training (HF-ACTION). Using data from HF-ACTION, a randomized controlled trial of exercise training in patients with HF and low left ventricular ejection fractions, HRQoL was measured using the Kansas City Cardiomyopathy Questionnaire (KCCQ) at baseline, 3 and 12 months, and annually up to 4 years. Treatment group effects on HRQoL were estimated using linear mixed models according to the intention-to-treat principle. It was hypothesized that baseline Hgb would be correlated with baseline KCCQ scales and that Hgb would moderate the beneficial effect of exercise training on HRQoL. Hgb level was not significantly correlated with baseline HRQoL. Baseline Hgb did not moderate the beneficial effect of exercise training on KCCQ overall or subscales relative to usual care. In conclusion, in the HF-ACTION cohort, there was no correlation with baseline Hgb and baseline HRQoL as measured by the KCCQ. In addition, the beneficial effects of HRQoL from exercise training were not modulated by baseline Hgb. © 2013 Elsevier Inc. All rights reserved.

Authors
Piña, IL; Lin, L; Weinfurt, KP; Isitt, JJ; Whellan, DJ; Schulman, KA; Flynn, KE
MLA Citation
Piña, IL, Lin, L, Weinfurt, KP, Isitt, JJ, Whellan, DJ, Schulman, KA, and Flynn, KE. "Hemoglobin, exercise training, and health status in patients with chronic heart failure (from the HF-ACTION randomized controlled trial)." American Journal of Cardiology 112.7 (2013): 971-976.
Source
scival
Published In
The American Journal of Cardiology
Volume
112
Issue
7
Publish Date
2013
Start Page
971
End Page
976
DOI
10.1016/j.amjcard.2013.05.033

Research participants' high expectations of benefit in early-phase oncology trials: are we asking the right question?

PURPOSE: To determine whether patients' expectations of benefit in early-phase oncology trials depend on how patients are queried and to explore whether expectations are associated with patient characteristics. PATIENTS AND METHODS: Participants were 171 patients in phase I or II oncology trials in the United States. After providing informed consent for a trial but before receiving the investigational therapy, participants answered questions about expectations of benefit. We randomly assigned participants to one of three groups corresponding to three queries about expectations: frequency type, belief type, or both. Main outcomes were differences in expectations by question type and the extent to which expectations were associated with demographic characteristics, numeracy, dispositional optimism, religiousness/spirituality, understanding of research, and other measures. RESULTS: The belief-type group had a higher mean expectation of benefit (64.4 of 100) than the combination group (51.6; P = .01) and the frequency-type group (43.1; P < .001). Mean expectations in the combination and frequency groups were not significantly different (P = .06). Belief-type expectations were associated with a preference for nonquantitative information (r = -0.19; 95% CI, -0.19 to -0.36), knowledge about research (r = -0.21; 95% CI, -0.38 to -0.03), dispositional optimism (r = 0.20; 95% CI, 0.01 to 0.37), and spirituality (r = 0.22; 95% CI, 0.03 to 0.38). Frequency-type expectations were associated with knowledge about clinical research (r = -0.27; 95% CI, -0.27 to -0.51). CONCLUSION: In early-phase oncology trials, patients' reported expectations of benefit differed according to how patients were queried and were associated with patient characteristics. These findings have implications for how informed consent is obtained and assessed.

Authors
Weinfurt, KP; Seils, DM; Lin, L; Sulmasy, DP; Astrow, AB; Hurwitz, HI; Cohen, RB; Meropol, NJ
MLA Citation
Weinfurt, KP, Seils, DM, Lin, L, Sulmasy, DP, Astrow, AB, Hurwitz, HI, Cohen, RB, and Meropol, NJ. "Research participants' high expectations of benefit in early-phase oncology trials: are we asking the right question?." J Clin Oncol 30.35 (December 10, 2012): 4396-4400.
PMID
23091107
Source
pubmed
Published In
Journal of Clinical Oncology
Volume
30
Issue
35
Publish Date
2012
Start Page
4396
End Page
4400
DOI
10.1200/JCO.2011.40.6587

Patient experiences with communication about sex during and after treatment for cancer.

OBJECTIVE: We studied patients' experiences with oncology providers regarding communication about sexual issues during and after treatment for cancer. METHODS: During development of the Patient-Reported Outcomes Measurement Information System (PROMIS(®)) Sexual Function measure, we collected focus group and survey data on communication with oncology professionals about sexual problems. We conducted 16 focus groups with patients and survivors (n = 109) and analyzed the discussions for major themes, including experiences discussing sex during oncology visits. During testing of the PROMIS Sexual Function measure, we assessed experiences discussing sexual problems with oncology professionals (n = 819) and measured bivariate associations between asking for information from clinicians and sexual function and satisfaction with sex life. RESULTS: Most patients and survivors (74%) thought that discussions with oncology professionals about sexual problems were important, but whether they had ever received information about sexual function from a provider varied by cancer type (23% lung, 29% breast, 39% colorectal, and 79% prostate). Those who had asked an oncology professional about sexual problems had significantly greater interest in sexual activity as well as more sexual dysfunction. CONCLUSIONS: Sexual problems are a widespread concern among patients and survivors, but there is much variation in experiences of communication about sexual issues, and many patients do not receive the information they need from their oncology providers. There are large differences in sexual function between patients who do and do not ask providers about sexual problems. Sexual health has yet to be fully integrated into oncology care, even for cancers involving sex organs.

Authors
Flynn, KE; Reese, JB; Jeffery, DD; Abernethy, AP; Lin, L; Shelby, RA; Porter, LS; Dombeck, CB; Weinfurt, KP
MLA Citation
Flynn, KE, Reese, JB, Jeffery, DD, Abernethy, AP, Lin, L, Shelby, RA, Porter, LS, Dombeck, CB, and Weinfurt, KP. "Patient experiences with communication about sex during and after treatment for cancer." Psychooncology 21.6 (June 2012): 594-601.
PMID
21394821
Source
pubmed
Published In
Psycho-Oncology
Volume
21
Issue
6
Publish Date
2012
Start Page
594
End Page
601
DOI
10.1002/pon.1947

Predictors of primary care physicians' self-reported intention to conduct suicide risk assessments.

Primary care physicians play a significant role in depression care, suicide assessment, and suicide prevention. However, little is known about what factors relate to and predict quality of depression care (assessment, diagnosis, and treatment), including suicide assessment. The authors explored the extent to which select patient and physician factors increase the probability of one element of quality of care: namely, intention to conduct suicide assessment. Data were collected from 404 randomly selected primary care physicians after their interaction with CD-ROM vignettes of actors portraying major depression with moderate levels of severity. The authors examined which patient factors and physician factors increase the likelihood of physicians' intention to conduct a suicide assessment. Data from the study revealed that physician-participants inquired about suicide 36% of the time. A random effects logistic model indicated that several factors were predictive of physicians' intention to conduct a suicide assessment: patient's comorbidity status (odds ratio (OR) = 0.61; 95% confidence interval (CI) = 0.37-1.00), physicians' age (OR = 0.67; 95% CI = 0.49-0.92), physicians' race (OR = 1.84; 95% CI = 1.08-3.13), and how depressed the physician perceived the virtual patient to be (OR = 0.58; 95% CI = 0.39-0.87). A substantial number of primary care physicians in this study indicated they would not assess for suicide, even though most physicians perceived the virtual patient to be depressed or very depressed. Further study is needed to establish factors that may be modified and targeted to increase the likelihood of physicians' providing one element of quality of care--suicide assessment--for depressed patients.

Authors
Hooper, LM; Epstein, SA; Weinfurt, KP; DeCoster, J; Qu, L; Hannah, NJ
MLA Citation
Hooper, LM, Epstein, SA, Weinfurt, KP, DeCoster, J, Qu, L, and Hannah, NJ. "Predictors of primary care physicians' self-reported intention to conduct suicide risk assessments." J Behav Health Serv Res 39.2 (April 2012): 103-115.
PMID
22218814
Source
pubmed
Published In
The Journal of Behavioral Health Services & Research
Volume
39
Issue
2
Publish Date
2012
Start Page
103
End Page
115
DOI
10.1007/s11414-011-9268-5

Prospective study of factors predicting adherence to surveillance mammography in women treated for breast cancer.

PURPOSE: This prospective study examined the factors that predicted sustained adherence to surveillance mammography in women treated for breast cancer. METHODS: Breast cancer survivors (N = 204) who were undergoing surveillance mammography completed questionnaires assessing mammography-related anticipatory anxiety, persistent breast pain, mammography pain, and catastrophic thoughts about mammography pain. Adherence to mammography in the following year was assessed. RESULTS: In the year after study entry, 84.8% of women (n = 173) returned for a subsequent mammogram. Unadjusted associations showed that younger age, shorter period of time since surgery, and having upper extremity lymphedema were associated with lower mammography adherence. Forty percent of women reported moderate to high levels of mammography pain (score of ≥ 5 on a 0 to 10 scale). Although mammography pain was not associated with adherence, higher levels of mammography-related anxiety and pain catastrophizing were associated with not returning for a mammogram (P < .05). The impact of anxiety on mammography use was mediated by pain catastrophizing (indirect effect, P < .05). CONCLUSION: Findings suggest that women who are younger, closer to the time of surgery, or have upper extremity lymphedema may be less likely to undergo repeated mammograms. It may be important for health professionals to remind selected patients directly that some women avoid repeat mammography and to re-emphasize the value of mammography for women with a history of breast cancer. Teaching women behavioral techniques (eg, redirecting attention) or providing medication for reducing anxiety could be considered for women with high levels of anxiety or catastrophic thoughts related to mammography.

Authors
Shelby, RA; Scipio, CD; Somers, TJ; Soo, MS; Weinfurt, KP; Keefe, FJ
MLA Citation
Shelby, RA, Scipio, CD, Somers, TJ, Soo, MS, Weinfurt, KP, and Keefe, FJ. "Prospective study of factors predicting adherence to surveillance mammography in women treated for breast cancer." J Clin Oncol 30.8 (March 10, 2012): 813-819.
PMID
22331949
Source
pubmed
Published In
Journal of Clinical Oncology
Volume
30
Issue
8
Publish Date
2012
Start Page
813
End Page
819
DOI
10.1200/JCO.2010.34.4333

Relationships between changes in patient-reported health status and functional capacity in outpatients with heart failure.

BACKGROUND: Heart failure trials use a variety of measures of functional capacity and quality of life. Lack of formal assessments of the relationships between changes in multiple aspects of patient-reported health status and measures of functional capacity over time limits the ability to compare results across studies. METHODS: Using data from HF-ACTION (N = 2331), we used the Pearson correlation coefficients and predicted change scores from linear mixed-effects modeling to demonstrate the associations between changes in patient-reported health status measured with the EQ-5D visual analog scale and the Kansas City Cardiomyopathy Questionnaire (KCCQ) and changes in peak VO(2) and 6-minute walk distance at 3 and 12 months. We examined a 5-point change in KCCQ within individuals to provide a framework for interpreting changes in these measures. RESULTS: After adjustment for baseline characteristics, correlations between changes in the visual analog scale and changes in peak VO(2) and 6-minute walk distance ranged from 0.13 to 0.28, and correlations between changes in the KCCQ overall and subscale scores and changes in peak VO(2) and 6-minute walk distance ranged from 0.18 to 0.34. A 5-point change in KCCQ was associated with a 2.50-mL kg(-1) min(-1) change in peak VO(2) (95% CI 2.21-2.86) and a 112-m change in 6-minute walk distance (95% CI 96-134). CONCLUSIONS: Changes in patient-reported health status are not highly correlated with changes in functional capacity. Our findings generally support the current practice of considering a 5-point change in the KCCQ within individuals to be clinically meaningful.

Authors
Flynn, KE; Lin, L; Moe, GW; Howlett, JG; Fine, LJ; Spertus, JA; McConnell, TR; Piña, IL; Weinfurt, KP
MLA Citation
Flynn, KE, Lin, L, Moe, GW, Howlett, JG, Fine, LJ, Spertus, JA, McConnell, TR, Piña, IL, and Weinfurt, KP. "Relationships between changes in patient-reported health status and functional capacity in outpatients with heart failure." Am Heart J 163.1 (January 2012): 88-94.e3.
PMID
22172441
Source
pubmed
Published In
American Heart Journal
Volume
163
Issue
1
Publish Date
2012
Start Page
88
End Page
94.e3
DOI
10.1016/j.ahj.2011.09.027

Institutional review boards' use and understanding of certificates of confidentiality.

Certificates of Confidentiality, issued by agencies of the U.S. government, are regarded as an important tool for meeting ethical and legal obligations to safeguard research participants' privacy and confidentiality. By shielding against forced disclosure of identifying data, Certificates are intended to facilitate research on sensitive topics critical to the public's health. Although Certificates are potentially applicable to an extensive array of research, their full legal effect is unclear, and little is known about stakeholders' views of the protections they provide. To begin addressing this challenge, we conducted a national survey of institutional review board (IRB) chairs, followed by telephone interviews with selected chairs, to learn more about their familiarity with and opinions about Certificates; their institutions' use of Certificates; policies and practices concerning when Certificates are required or recommended; and the role Certificates play in assessments of research risk. Overall, our results suggest uncertainty about Certificates among IRB chairs. On most objective knowledge questions, most respondents chose the incorrect answer or 'unsure'. Among chairs who reported more familiarity with Certificates, composite opinion scores calculated based on five survey questions were evenly distributed among positive, neutral/middle, and negative views. Further, respondents expressed a variety of ideas about the appropriate use of Certificates, what they are intended to protect, and their effect on research risk. Nevertheless, chairs who participated in our study commonly viewed Certificates as a potentially valuable tool, frequently describing them as an 'extra layer' of protection. These findings lead to several practical observations concerning the need for more stakeholder education about Certificates, consideration of Certificates for a broader range of studies, the importance of remaining vigilant and using all tools available to protect participants' confidentiality, and the need for further empirical investigation of Certificates' effect on researchers and research participants.

Authors
Beskow, LM; Check, DK; Namey, EE; Dame, LA; Lin, L; Cooper, A; Weinfurt, KP; Wolf, LE
MLA Citation
Beskow, LM, Check, DK, Namey, EE, Dame, LA, Lin, L, Cooper, A, Weinfurt, KP, and Wolf, LE. "Institutional review boards' use and understanding of certificates of confidentiality." PLoS One 7.9 (2012): e44050-.
PMID
22962599
Source
pubmed
Published In
PloS one
Volume
7
Issue
9
Publish Date
2012
Start Page
e44050
DOI
10.1371/journal.pone.0044050

Impact of the Patient-Reported Outcomes Management Information System (PROMIS) upon the design and operation of multi-center clinical trials: a qualitative research study.

New technologies may be required to integrate the National Institutes of Health's Patient Reported Outcome Management Information System (PROMIS) into multi-center clinical trials. To better understand this need, we identified likely PROMIS reporting formats, developed a multi-center clinical trial process model, and identified gaps between current capabilities and those necessary for PROMIS. These results were evaluated by key trial constituencies. Issues reported by principal investigators fell into two categories: acceptance by key regulators and the scientific community, and usability for researchers and clinicians. Issues reported by the coordinating center, participating sites, and study subjects were those faced when integrating new technologies into existing clinical trial systems. We then defined elements of a PROMIS Tool Kit required for integrating PROMIS into a multi-center clinical trial environment. The requirements identified in this study serve as a framework for future investigators in the design, development, implementation, and operation of PROMIS Tool Kit technologies.

Authors
Eisenstein, EL; Diener, LW; Nahm, M; Weinfurt, KP
MLA Citation
Eisenstein, EL, Diener, LW, Nahm, M, and Weinfurt, KP. "Impact of the Patient-Reported Outcomes Management Information System (PROMIS) upon the design and operation of multi-center clinical trials: a qualitative research study." Journal of medical systems 35.6 (December 2011): 1521-1530.
PMID
20703765
Source
epmc
Published In
Journal of Medical Systems
Volume
35
Issue
6
Publish Date
2011
Start Page
1521
End Page
1530
DOI
10.1007/s10916-010-9429-8

Use of patient-reported outcomes in randomized, double-blind, placebo-controlled clinical trials.

BACKGROUND: To optimize the use of patient-reported outcomes (PROs) in clinical research, it is first necessary to review the current use of these outcomes in clinical trials to determine under what circumstances they are most useful, and to reveal current limitations. PURPOSE: To investigate current patterns of use of PROs in clinical trials. RESEARCH DESIGN: We conducted a systematic literature review of all double-blind, placebo-controlled, randomized clinical trials using one or more PROs as a study outcome from 2004 to 2006. Data were abstracted and analyzed with descriptive statistics and logistic regression to characterize the use of PROs in clinical trials. RESULTS: The 180 clinical trials that met the study inclusion criteria used 173 unique instruments to measure a total of 466 PROs. Most PRO measurements were obtained using relatively few PRO instruments, with one-third of PRO instruments applied in more than 1 trial. In multivariable analysis, tests of statistical significance were more often reported for PROs used as primary trial outcomes. Statistically significant PRO outcomes (P<0.05) were more likely among disease-specific PROs compared with general PROs, PROs with a discussion of minimally important difference, and larger trials. CONCLUSIONS: PRO instruments may be improved through efforts to provide centralized electronic administration, cross-validation, and standardized interpretation of clinically relevant outcomes. The majority of PROs used in current clinical trials come from relatively few, commonly used disease-specific PRO instruments within major therapeutic areas.

Authors
Dinan, MA; Compton, KL; Dhillon, JK; Hammill, BG; Dewitt, EM; Weinfurt, KP; Schulman, KA
MLA Citation
Dinan, MA, Compton, KL, Dhillon, JK, Hammill, BG, Dewitt, EM, Weinfurt, KP, and Schulman, KA. "Use of patient-reported outcomes in randomized, double-blind, placebo-controlled clinical trials." Med Care 49.4 (April 2011): 415-419. (Review)
PMID
21368680
Source
pubmed
Published In
Medical Care
Volume
49
Issue
4
Publish Date
2011
Start Page
415
End Page
419
DOI
10.1097/MLR.0b013e3182064aa2

Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®).

Cancer and treatments for cancer affect specific aspects of sexual functioning and intimacy; however, limited qualitative work has been done in diverse cancer populations. As part of an effort to improve measurement of self-reported sexual functioning, we explored the scope and importance of sexual functioning and intimacy to patients across cancer sites and along the continuum of care.We conducted 16 diagnosis- and sex-specific focus groups with patients recruited from the Duke University tumor registry and oncology/hematology clinics (N=109). A trained note taker produced field notes summarizing the discussions. An independent auditor verified field notes against written transcripts. The content of the discussions was analyzed for major themes by two independent coders.Across all cancers, the most commonly discussed cancer- or treatment-related effects on sexual functioning and intimacy were fatigue, treatment-related hair loss, weight gain and organ loss or scarring. Additional barriers were unique to particular diagnoses, such as shortness of breath in lung cancer, gastrointestinal problems in colorectal cancers and incontinence in prostate cancer. Sexual functioning and intimacy were considered important to quality of life. While most effects of cancer were considered negative, many participants identified improvements to intimacy after cancer.Overall evaluations of satisfaction with sex life did not always correspond to specific aspects of functioning (e.g. erectile dysfunction), presenting a challenge to researchers aiming to measure sexual functioning as an outcome. Health-care providers should not assume that level of sexual impairment determines sexual satisfaction and should explore cancer patients' sexual concerns directly.

Authors
Flynn, KE; Jeffery, DD; Keefe, FJ; Porter, LS; Shelby, RA; Fawzy, MR; Gosselin, TK; Reeve, BB; Weinfurt, KP
MLA Citation
Flynn, KE, Jeffery, DD, Keefe, FJ, Porter, LS, Shelby, RA, Fawzy, MR, Gosselin, TK, Reeve, BB, and Weinfurt, KP. "Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®)." Psycho-oncology 20.4 (April 2011): 378-386.
PMID
20878833
Source
epmc
Published In
Psycho-Oncology
Volume
20
Issue
4
Publish Date
2011
Start Page
378
End Page
386
DOI
10.1002/pon.1738

Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®).

Cancer and treatments for cancer affect specific aspects of sexual functioning and intimacy; however, limited qualitative work has been done in diverse cancer populations. As part of an effort to improve measurement of self-reported sexual functioning, we explored the scope and importance of sexual functioning and intimacy to patients across cancer sites and along the continuum of care.We conducted 16 diagnosis- and sex-specific focus groups with patients recruited from the Duke University tumor registry and oncology/hematology clinics (N=109). A trained note taker produced field notes summarizing the discussions. An independent auditor verified field notes against written transcripts. The content of the discussions was analyzed for major themes by two independent coders.Across all cancers, the most commonly discussed cancer- or treatment-related effects on sexual functioning and intimacy were fatigue, treatment-related hair loss, weight gain and organ loss or scarring. Additional barriers were unique to particular diagnoses, such as shortness of breath in lung cancer, gastrointestinal problems in colorectal cancers and incontinence in prostate cancer. Sexual functioning and intimacy were considered important to quality of life. While most effects of cancer were considered negative, many participants identified improvements to intimacy after cancer.Overall evaluations of satisfaction with sex life did not always correspond to specific aspects of functioning (e.g. erectile dysfunction), presenting a challenge to researchers aiming to measure sexual functioning as an outcome. Health-care providers should not assume that level of sexual impairment determines sexual satisfaction and should explore cancer patients' sexual concerns directly.

Authors
Flynn, KE; Jeffery, DD; Keefe, FJ; Porter, LS; Shelby, RA; Fawzy, MR; Gosselin, TK; Reeve, BB; Weinfurt, KP
MLA Citation
Flynn, KE, Jeffery, DD, Keefe, FJ, Porter, LS, Shelby, RA, Fawzy, MR, Gosselin, TK, Reeve, BB, and Weinfurt, KP. "Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®)." Psycho-oncology 20.4 (April 2011): 378-386.
PMID
20878833
Source
epmc
Published In
Psycho-Oncology
Volume
20
Issue
4
Publish Date
2011
Start Page
378
End Page
386
DOI
10.1002/pon.1738

Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®).

Cancer and treatments for cancer affect specific aspects of sexual functioning and intimacy; however, limited qualitative work has been done in diverse cancer populations. As part of an effort to improve measurement of self-reported sexual functioning, we explored the scope and importance of sexual functioning and intimacy to patients across cancer sites and along the continuum of care.We conducted 16 diagnosis- and sex-specific focus groups with patients recruited from the Duke University tumor registry and oncology/hematology clinics (N=109). A trained note taker produced field notes summarizing the discussions. An independent auditor verified field notes against written transcripts. The content of the discussions was analyzed for major themes by two independent coders.Across all cancers, the most commonly discussed cancer- or treatment-related effects on sexual functioning and intimacy were fatigue, treatment-related hair loss, weight gain and organ loss or scarring. Additional barriers were unique to particular diagnoses, such as shortness of breath in lung cancer, gastrointestinal problems in colorectal cancers and incontinence in prostate cancer. Sexual functioning and intimacy were considered important to quality of life. While most effects of cancer were considered negative, many participants identified improvements to intimacy after cancer.Overall evaluations of satisfaction with sex life did not always correspond to specific aspects of functioning (e.g. erectile dysfunction), presenting a challenge to researchers aiming to measure sexual functioning as an outcome. Health-care providers should not assume that level of sexual impairment determines sexual satisfaction and should explore cancer patients' sexual concerns directly.

Authors
Flynn, KE; Jeffery, DD; Keefe, FJ; Porter, LS; Shelby, RA; Fawzy, MR; Gosselin, TK; Reeve, BB; Weinfurt, KP
MLA Citation
Flynn, KE, Jeffery, DD, Keefe, FJ, Porter, LS, Shelby, RA, Fawzy, MR, Gosselin, TK, Reeve, BB, and Weinfurt, KP. "Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®)." Psycho-oncology 20.4 (April 2011): 378-386.
PMID
20878833
Source
epmc
Published In
Psycho-Oncology
Volume
20
Issue
4
Publish Date
2011
Start Page
378
End Page
386
DOI
10.1002/pon.1738

Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®).

Cancer and treatments for cancer affect specific aspects of sexual functioning and intimacy; however, limited qualitative work has been done in diverse cancer populations. As part of an effort to improve measurement of self-reported sexual functioning, we explored the scope and importance of sexual functioning and intimacy to patients across cancer sites and along the continuum of care.We conducted 16 diagnosis- and sex-specific focus groups with patients recruited from the Duke University tumor registry and oncology/hematology clinics (N=109). A trained note taker produced field notes summarizing the discussions. An independent auditor verified field notes against written transcripts. The content of the discussions was analyzed for major themes by two independent coders.Across all cancers, the most commonly discussed cancer- or treatment-related effects on sexual functioning and intimacy were fatigue, treatment-related hair loss, weight gain and organ loss or scarring. Additional barriers were unique to particular diagnoses, such as shortness of breath in lung cancer, gastrointestinal problems in colorectal cancers and incontinence in prostate cancer. Sexual functioning and intimacy were considered important to quality of life. While most effects of cancer were considered negative, many participants identified improvements to intimacy after cancer.Overall evaluations of satisfaction with sex life did not always correspond to specific aspects of functioning (e.g. erectile dysfunction), presenting a challenge to researchers aiming to measure sexual functioning as an outcome. Health-care providers should not assume that level of sexual impairment determines sexual satisfaction and should explore cancer patients' sexual concerns directly.

Authors
Flynn, KE; Jeffery, DD; Keefe, FJ; Porter, LS; Shelby, RA; Fawzy, MR; Gosselin, TK; Reeve, BB; Weinfurt, KP
MLA Citation
Flynn, KE, Jeffery, DD, Keefe, FJ, Porter, LS, Shelby, RA, Fawzy, MR, Gosselin, TK, Reeve, BB, and Weinfurt, KP. "Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®)." Psycho-oncology 20.4 (April 2011): 378-386.
PMID
20878833
Source
epmc
Published In
Psycho-Oncology
Volume
20
Issue
4
Publish Date
2011
Start Page
378
End Page
386
DOI
10.1002/pon.1738

Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®).

Cancer and treatments for cancer affect specific aspects of sexual functioning and intimacy; however, limited qualitative work has been done in diverse cancer populations. As part of an effort to improve measurement of self-reported sexual functioning, we explored the scope and importance of sexual functioning and intimacy to patients across cancer sites and along the continuum of care.We conducted 16 diagnosis- and sex-specific focus groups with patients recruited from the Duke University tumor registry and oncology/hematology clinics (N=109). A trained note taker produced field notes summarizing the discussions. An independent auditor verified field notes against written transcripts. The content of the discussions was analyzed for major themes by two independent coders.Across all cancers, the most commonly discussed cancer- or treatment-related effects on sexual functioning and intimacy were fatigue, treatment-related hair loss, weight gain and organ loss or scarring. Additional barriers were unique to particular diagnoses, such as shortness of breath in lung cancer, gastrointestinal problems in colorectal cancers and incontinence in prostate cancer. Sexual functioning and intimacy were considered important to quality of life. While most effects of cancer were considered negative, many participants identified improvements to intimacy after cancer.Overall evaluations of satisfaction with sex life did not always correspond to specific aspects of functioning (e.g. erectile dysfunction), presenting a challenge to researchers aiming to measure sexual functioning as an outcome. Health-care providers should not assume that level of sexual impairment determines sexual satisfaction and should explore cancer patients' sexual concerns directly.

Authors
Flynn, KE; Jeffery, DD; Keefe, FJ; Porter, LS; Shelby, RA; Fawzy, MR; Gosselin, TK; Reeve, BB; Weinfurt, KP
MLA Citation
Flynn, KE, Jeffery, DD, Keefe, FJ, Porter, LS, Shelby, RA, Fawzy, MR, Gosselin, TK, Reeve, BB, and Weinfurt, KP. "Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®)." Psychooncology 20.4 (April 2011): 378-386.
PMID
20878833
Source
epmc
Published In
Psycho-Oncology
Volume
20
Issue
4
Publish Date
2011
Start Page
378
End Page
386
DOI
10.1002/pon.1738

Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®).

Cancer and treatments for cancer affect specific aspects of sexual functioning and intimacy; however, limited qualitative work has been done in diverse cancer populations. As part of an effort to improve measurement of self-reported sexual functioning, we explored the scope and importance of sexual functioning and intimacy to patients across cancer sites and along the continuum of care.We conducted 16 diagnosis- and sex-specific focus groups with patients recruited from the Duke University tumor registry and oncology/hematology clinics (N=109). A trained note taker produced field notes summarizing the discussions. An independent auditor verified field notes against written transcripts. The content of the discussions was analyzed for major themes by two independent coders.Across all cancers, the most commonly discussed cancer- or treatment-related effects on sexual functioning and intimacy were fatigue, treatment-related hair loss, weight gain and organ loss or scarring. Additional barriers were unique to particular diagnoses, such as shortness of breath in lung cancer, gastrointestinal problems in colorectal cancers and incontinence in prostate cancer. Sexual functioning and intimacy were considered important to quality of life. While most effects of cancer were considered negative, many participants identified improvements to intimacy after cancer.Overall evaluations of satisfaction with sex life did not always correspond to specific aspects of functioning (e.g. erectile dysfunction), presenting a challenge to researchers aiming to measure sexual functioning as an outcome. Health-care providers should not assume that level of sexual impairment determines sexual satisfaction and should explore cancer patients' sexual concerns directly.

Authors
Flynn, KE; Jeffery, DD; Keefe, FJ; Porter, LS; Shelby, RA; Fawzy, MR; Gosselin, TK; Reeve, BB; Weinfurt, KP
MLA Citation
Flynn, KE, Jeffery, DD, Keefe, FJ, Porter, LS, Shelby, RA, Fawzy, MR, Gosselin, TK, Reeve, BB, and Weinfurt, KP. "Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®)." Psychooncology 20.4 (April 2011): 378-386.
PMID
20878833
Source
epmc
Published In
Psycho-Oncology
Volume
20
Issue
4
Publish Date
2011
Start Page
378
End Page
386
DOI
10.1002/pon.1738

Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®).

Cancer and treatments for cancer affect specific aspects of sexual functioning and intimacy; however, limited qualitative work has been done in diverse cancer populations. As part of an effort to improve measurement of self-reported sexual functioning, we explored the scope and importance of sexual functioning and intimacy to patients across cancer sites and along the continuum of care.We conducted 16 diagnosis- and sex-specific focus groups with patients recruited from the Duke University tumor registry and oncology/hematology clinics (N=109). A trained note taker produced field notes summarizing the discussions. An independent auditor verified field notes against written transcripts. The content of the discussions was analyzed for major themes by two independent coders.Across all cancers, the most commonly discussed cancer- or treatment-related effects on sexual functioning and intimacy were fatigue, treatment-related hair loss, weight gain and organ loss or scarring. Additional barriers were unique to particular diagnoses, such as shortness of breath in lung cancer, gastrointestinal problems in colorectal cancers and incontinence in prostate cancer. Sexual functioning and intimacy were considered important to quality of life. While most effects of cancer were considered negative, many participants identified improvements to intimacy after cancer.Overall evaluations of satisfaction with sex life did not always correspond to specific aspects of functioning (e.g. erectile dysfunction), presenting a challenge to researchers aiming to measure sexual functioning as an outcome. Health-care providers should not assume that level of sexual impairment determines sexual satisfaction and should explore cancer patients' sexual concerns directly.

Authors
Flynn, KE; Jeffery, DD; Keefe, FJ; Porter, LS; Shelby, RA; Fawzy, MR; Gosselin, TK; Reeve, BB; Weinfurt, KP
MLA Citation
Flynn, KE, Jeffery, DD, Keefe, FJ, Porter, LS, Shelby, RA, Fawzy, MR, Gosselin, TK, Reeve, BB, and Weinfurt, KP. "Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®)." Psychooncology 20.4 (April 2011): 378-386.
PMID
20878833
Source
epmc
Published In
Psycho-Oncology
Volume
20
Issue
4
Publish Date
2011
Start Page
378
End Page
386
DOI
10.1002/pon.1738

Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®).

Cancer and treatments for cancer affect specific aspects of sexual functioning and intimacy; however, limited qualitative work has been done in diverse cancer populations. As part of an effort to improve measurement of self-reported sexual functioning, we explored the scope and importance of sexual functioning and intimacy to patients across cancer sites and along the continuum of care.We conducted 16 diagnosis- and sex-specific focus groups with patients recruited from the Duke University tumor registry and oncology/hematology clinics (N=109). A trained note taker produced field notes summarizing the discussions. An independent auditor verified field notes against written transcripts. The content of the discussions was analyzed for major themes by two independent coders.Across all cancers, the most commonly discussed cancer- or treatment-related effects on sexual functioning and intimacy were fatigue, treatment-related hair loss, weight gain and organ loss or scarring. Additional barriers were unique to particular diagnoses, such as shortness of breath in lung cancer, gastrointestinal problems in colorectal cancers and incontinence in prostate cancer. Sexual functioning and intimacy were considered important to quality of life. While most effects of cancer were considered negative, many participants identified improvements to intimacy after cancer.Overall evaluations of satisfaction with sex life did not always correspond to specific aspects of functioning (e.g. erectile dysfunction), presenting a challenge to researchers aiming to measure sexual functioning as an outcome. Health-care providers should not assume that level of sexual impairment determines sexual satisfaction and should explore cancer patients' sexual concerns directly.

Authors
Flynn, KE; Jeffery, DD; Keefe, FJ; Porter, LS; Shelby, RA; Fawzy, MR; Gosselin, TK; Reeve, BB; Weinfurt, KP
MLA Citation
Flynn, KE, Jeffery, DD, Keefe, FJ, Porter, LS, Shelby, RA, Fawzy, MR, Gosselin, TK, Reeve, BB, and Weinfurt, KP. "Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®)." Psychooncology 20.4 (April 2011): 378-386.
PMID
20878833
Source
epmc
Published In
Psycho-Oncology
Volume
20
Issue
4
Publish Date
2011
Start Page
378
End Page
386
DOI
10.1002/pon.1738

Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®).

Cancer and treatments for cancer affect specific aspects of sexual functioning and intimacy; however, limited qualitative work has been done in diverse cancer populations. As part of an effort to improve measurement of self-reported sexual functioning, we explored the scope and importance of sexual functioning and intimacy to patients across cancer sites and along the continuum of care.We conducted 16 diagnosis- and sex-specific focus groups with patients recruited from the Duke University tumor registry and oncology/hematology clinics (N=109). A trained note taker produced field notes summarizing the discussions. An independent auditor verified field notes against written transcripts. The content of the discussions was analyzed for major themes by two independent coders.Across all cancers, the most commonly discussed cancer- or treatment-related effects on sexual functioning and intimacy were fatigue, treatment-related hair loss, weight gain and organ loss or scarring. Additional barriers were unique to particular diagnoses, such as shortness of breath in lung cancer, gastrointestinal problems in colorectal cancers and incontinence in prostate cancer. Sexual functioning and intimacy were considered important to quality of life. While most effects of cancer were considered negative, many participants identified improvements to intimacy after cancer.Overall evaluations of satisfaction with sex life did not always correspond to specific aspects of functioning (e.g. erectile dysfunction), presenting a challenge to researchers aiming to measure sexual functioning as an outcome. Health-care providers should not assume that level of sexual impairment determines sexual satisfaction and should explore cancer patients' sexual concerns directly.

Authors
Flynn, KE; Jeffery, DD; Keefe, FJ; Porter, LS; Shelby, RA; Fawzy, MR; Gosselin, TK; Reeve, BB; Weinfurt, KP
MLA Citation
Flynn, KE, Jeffery, DD, Keefe, FJ, Porter, LS, Shelby, RA, Fawzy, MR, Gosselin, TK, Reeve, BB, and Weinfurt, KP. "Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®)." Psycho-oncology 20.4 (April 2011): 378-386.
PMID
20878833
Source
epmc
Published In
Psycho-Oncology
Volume
20
Issue
4
Publish Date
2011
Start Page
378
End Page
386
DOI
10.1002/pon.1738

Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®).

Cancer and treatments for cancer affect specific aspects of sexual functioning and intimacy; however, limited qualitative work has been done in diverse cancer populations. As part of an effort to improve measurement of self-reported sexual functioning, we explored the scope and importance of sexual functioning and intimacy to patients across cancer sites and along the continuum of care.We conducted 16 diagnosis- and sex-specific focus groups with patients recruited from the Duke University tumor registry and oncology/hematology clinics (N=109). A trained note taker produced field notes summarizing the discussions. An independent auditor verified field notes against written transcripts. The content of the discussions was analyzed for major themes by two independent coders.Across all cancers, the most commonly discussed cancer- or treatment-related effects on sexual functioning and intimacy were fatigue, treatment-related hair loss, weight gain and organ loss or scarring. Additional barriers were unique to particular diagnoses, such as shortness of breath in lung cancer, gastrointestinal problems in colorectal cancers and incontinence in prostate cancer. Sexual functioning and intimacy were considered important to quality of life. While most effects of cancer were considered negative, many participants identified improvements to intimacy after cancer.Overall evaluations of satisfaction with sex life did not always correspond to specific aspects of functioning (e.g. erectile dysfunction), presenting a challenge to researchers aiming to measure sexual functioning as an outcome. Health-care providers should not assume that level of sexual impairment determines sexual satisfaction and should explore cancer patients' sexual concerns directly.

Authors
Flynn, KE; Jeffery, DD; Keefe, FJ; Porter, LS; Shelby, RA; Fawzy, MR; Gosselin, TK; Reeve, BB; Weinfurt, KP
MLA Citation
Flynn, KE, Jeffery, DD, Keefe, FJ, Porter, LS, Shelby, RA, Fawzy, MR, Gosselin, TK, Reeve, BB, and Weinfurt, KP. "Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®)." Psycho-oncology 20.4 (April 2011): 378-386.
PMID
20878833
Source
epmc
Published In
Psycho-Oncology
Volume
20
Issue
4
Publish Date
2011
Start Page
378
End Page
386
DOI
10.1002/pon.1738

Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®).

Cancer and treatments for cancer affect specific aspects of sexual functioning and intimacy; however, limited qualitative work has been done in diverse cancer populations. As part of an effort to improve measurement of self-reported sexual functioning, we explored the scope and importance of sexual functioning and intimacy to patients across cancer sites and along the continuum of care.We conducted 16 diagnosis- and sex-specific focus groups with patients recruited from the Duke University tumor registry and oncology/hematology clinics (N=109). A trained note taker produced field notes summarizing the discussions. An independent auditor verified field notes against written transcripts. The content of the discussions was analyzed for major themes by two independent coders.Across all cancers, the most commonly discussed cancer- or treatment-related effects on sexual functioning and intimacy were fatigue, treatment-related hair loss, weight gain and organ loss or scarring. Additional barriers were unique to particular diagnoses, such as shortness of breath in lung cancer, gastrointestinal problems in colorectal cancers and incontinence in prostate cancer. Sexual functioning and intimacy were considered important to quality of life. While most effects of cancer were considered negative, many participants identified improvements to intimacy after cancer.Overall evaluations of satisfaction with sex life did not always correspond to specific aspects of functioning (e.g. erectile dysfunction), presenting a challenge to researchers aiming to measure sexual functioning as an outcome. Health-care providers should not assume that level of sexual impairment determines sexual satisfaction and should explore cancer patients' sexual concerns directly.

Authors
Flynn, KE; Jeffery, DD; Keefe, FJ; Porter, LS; Shelby, RA; Fawzy, MR; Gosselin, TK; Reeve, BB; Weinfurt, KP
MLA Citation
Flynn, KE, Jeffery, DD, Keefe, FJ, Porter, LS, Shelby, RA, Fawzy, MR, Gosselin, TK, Reeve, BB, and Weinfurt, KP. "Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®)." Psycho-oncology 20.4 (April 2011): 378-386.
PMID
20878833
Source
epmc
Published In
Psycho-Oncology
Volume
20
Issue
4
Publish Date
2011
Start Page
378
End Page
386
DOI
10.1002/pon.1738

Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®).

Cancer and treatments for cancer affect specific aspects of sexual functioning and intimacy; however, limited qualitative work has been done in diverse cancer populations. As part of an effort to improve measurement of self-reported sexual functioning, we explored the scope and importance of sexual functioning and intimacy to patients across cancer sites and along the continuum of care.We conducted 16 diagnosis- and sex-specific focus groups with patients recruited from the Duke University tumor registry and oncology/hematology clinics (N=109). A trained note taker produced field notes summarizing the discussions. An independent auditor verified field notes against written transcripts. The content of the discussions was analyzed for major themes by two independent coders.Across all cancers, the most commonly discussed cancer- or treatment-related effects on sexual functioning and intimacy were fatigue, treatment-related hair loss, weight gain and organ loss or scarring. Additional barriers were unique to particular diagnoses, such as shortness of breath in lung cancer, gastrointestinal problems in colorectal cancers and incontinence in prostate cancer. Sexual functioning and intimacy were considered important to quality of life. While most effects of cancer were considered negative, many participants identified improvements to intimacy after cancer.Overall evaluations of satisfaction with sex life did not always correspond to specific aspects of functioning (e.g. erectile dysfunction), presenting a challenge to researchers aiming to measure sexual functioning as an outcome. Health-care providers should not assume that level of sexual impairment determines sexual satisfaction and should explore cancer patients' sexual concerns directly.

Authors
Flynn, KE; Jeffery, DD; Keefe, FJ; Porter, LS; Shelby, RA; Fawzy, MR; Gosselin, TK; Reeve, BB; Weinfurt, KP
MLA Citation
Flynn, KE, Jeffery, DD, Keefe, FJ, Porter, LS, Shelby, RA, Fawzy, MR, Gosselin, TK, Reeve, BB, and Weinfurt, KP. "Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®)." Psycho-oncology 20.4 (April 2011): 378-386.
PMID
20878833
Source
epmc
Published In
Psycho-Oncology
Volume
20
Issue
4
Publish Date
2011
Start Page
378
End Page
386
DOI
10.1002/pon.1738

Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®).

Cancer and treatments for cancer affect specific aspects of sexual functioning and intimacy; however, limited qualitative work has been done in diverse cancer populations. As part of an effort to improve measurement of self-reported sexual functioning, we explored the scope and importance of sexual functioning and intimacy to patients across cancer sites and along the continuum of care.We conducted 16 diagnosis- and sex-specific focus groups with patients recruited from the Duke University tumor registry and oncology/hematology clinics (N=109). A trained note taker produced field notes summarizing the discussions. An independent auditor verified field notes against written transcripts. The content of the discussions was analyzed for major themes by two independent coders.Across all cancers, the most commonly discussed cancer- or treatment-related effects on sexual functioning and intimacy were fatigue, treatment-related hair loss, weight gain and organ loss or scarring. Additional barriers were unique to particular diagnoses, such as shortness of breath in lung cancer, gastrointestinal problems in colorectal cancers and incontinence in prostate cancer. Sexual functioning and intimacy were considered important to quality of life. While most effects of cancer were considered negative, many participants identified improvements to intimacy after cancer.Overall evaluations of satisfaction with sex life did not always correspond to specific aspects of functioning (e.g. erectile dysfunction), presenting a challenge to researchers aiming to measure sexual functioning as an outcome. Health-care providers should not assume that level of sexual impairment determines sexual satisfaction and should explore cancer patients' sexual concerns directly.

Authors
Flynn, KE; Jeffery, DD; Keefe, FJ; Porter, LS; Shelby, RA; Fawzy, MR; Gosselin, TK; Reeve, BB; Weinfurt, KP
MLA Citation
Flynn, KE, Jeffery, DD, Keefe, FJ, Porter, LS, Shelby, RA, Fawzy, MR, Gosselin, TK, Reeve, BB, and Weinfurt, KP. "Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®)." Psychooncology 20.4 (April 2011): 378-386.
PMID
20878833
Source
epmc
Published In
Psycho-Oncology
Volume
20
Issue
4
Publish Date
2011
Start Page
378
End Page
386
DOI
10.1002/pon.1738

Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®).

Cancer and treatments for cancer affect specific aspects of sexual functioning and intimacy; however, limited qualitative work has been done in diverse cancer populations. As part of an effort to improve measurement of self-reported sexual functioning, we explored the scope and importance of sexual functioning and intimacy to patients across cancer sites and along the continuum of care.We conducted 16 diagnosis- and sex-specific focus groups with patients recruited from the Duke University tumor registry and oncology/hematology clinics (N=109). A trained note taker produced field notes summarizing the discussions. An independent auditor verified field notes against written transcripts. The content of the discussions was analyzed for major themes by two independent coders.Across all cancers, the most commonly discussed cancer- or treatment-related effects on sexual functioning and intimacy were fatigue, treatment-related hair loss, weight gain and organ loss or scarring. Additional barriers were unique to particular diagnoses, such as shortness of breath in lung cancer, gastrointestinal problems in colorectal cancers and incontinence in prostate cancer. Sexual functioning and intimacy were considered important to quality of life. While most effects of cancer were considered negative, many participants identified improvements to intimacy after cancer.Overall evaluations of satisfaction with sex life did not always correspond to specific aspects of functioning (e.g. erectile dysfunction), presenting a challenge to researchers aiming to measure sexual functioning as an outcome. Health-care providers should not assume that level of sexual impairment determines sexual satisfaction and should explore cancer patients' sexual concerns directly.

Authors
Flynn, KE; Jeffery, DD; Keefe, FJ; Porter, LS; Shelby, RA; Fawzy, MR; Gosselin, TK; Reeve, BB; Weinfurt, KP
MLA Citation
Flynn, KE, Jeffery, DD, Keefe, FJ, Porter, LS, Shelby, RA, Fawzy, MR, Gosselin, TK, Reeve, BB, and Weinfurt, KP. "Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®)." Psychooncology 20.4 (April 2011): 378-386.
PMID
20878833
Source
epmc
Published In
Psycho-Oncology
Volume
20
Issue
4
Publish Date
2011
Start Page
378
End Page
386
DOI
10.1002/pon.1738

Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®).

Cancer and treatments for cancer affect specific aspects of sexual functioning and intimacy; however, limited qualitative work has been done in diverse cancer populations. As part of an effort to improve measurement of self-reported sexual functioning, we explored the scope and importance of sexual functioning and intimacy to patients across cancer sites and along the continuum of care.We conducted 16 diagnosis- and sex-specific focus groups with patients recruited from the Duke University tumor registry and oncology/hematology clinics (N=109). A trained note taker produced field notes summarizing the discussions. An independent auditor verified field notes against written transcripts. The content of the discussions was analyzed for major themes by two independent coders.Across all cancers, the most commonly discussed cancer- or treatment-related effects on sexual functioning and intimacy were fatigue, treatment-related hair loss, weight gain and organ loss or scarring. Additional barriers were unique to particular diagnoses, such as shortness of breath in lung cancer, gastrointestinal problems in colorectal cancers and incontinence in prostate cancer. Sexual functioning and intimacy were considered important to quality of life. While most effects of cancer were considered negative, many participants identified improvements to intimacy after cancer.Overall evaluations of satisfaction with sex life did not always correspond to specific aspects of functioning (e.g. erectile dysfunction), presenting a challenge to researchers aiming to measure sexual functioning as an outcome. Health-care providers should not assume that level of sexual impairment determines sexual satisfaction and should explore cancer patients' sexual concerns directly.

Authors
Flynn, KE; Jeffery, DD; Keefe, FJ; Porter, LS; Shelby, RA; Fawzy, MR; Gosselin, TK; Reeve, BB; Weinfurt, KP
MLA Citation
Flynn, KE, Jeffery, DD, Keefe, FJ, Porter, LS, Shelby, RA, Fawzy, MR, Gosselin, TK, Reeve, BB, and Weinfurt, KP. "Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®)." Psychooncology 20.4 (April 2011): 378-386.
PMID
20878833
Source
epmc
Published In
Psycho-Oncology
Volume
20
Issue
4
Publish Date
2011
Start Page
378
End Page
386
DOI
10.1002/pon.1738

Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®).

Cancer and treatments for cancer affect specific aspects of sexual functioning and intimacy; however, limited qualitative work has been done in diverse cancer populations. As part of an effort to improve measurement of self-reported sexual functioning, we explored the scope and importance of sexual functioning and intimacy to patients across cancer sites and along the continuum of care.We conducted 16 diagnosis- and sex-specific focus groups with patients recruited from the Duke University tumor registry and oncology/hematology clinics (N=109). A trained note taker produced field notes summarizing the discussions. An independent auditor verified field notes against written transcripts. The content of the discussions was analyzed for major themes by two independent coders.Across all cancers, the most commonly discussed cancer- or treatment-related effects on sexual functioning and intimacy were fatigue, treatment-related hair loss, weight gain and organ loss or scarring. Additional barriers were unique to particular diagnoses, such as shortness of breath in lung cancer, gastrointestinal problems in colorectal cancers and incontinence in prostate cancer. Sexual functioning and intimacy were considered important to quality of life. While most effects of cancer were considered negative, many participants identified improvements to intimacy after cancer.Overall evaluations of satisfaction with sex life did not always correspond to specific aspects of functioning (e.g. erectile dysfunction), presenting a challenge to researchers aiming to measure sexual functioning as an outcome. Health-care providers should not assume that level of sexual impairment determines sexual satisfaction and should explore cancer patients' sexual concerns directly.

Authors
Flynn, KE; Jeffery, DD; Keefe, FJ; Porter, LS; Shelby, RA; Fawzy, MR; Gosselin, TK; Reeve, BB; Weinfurt, KP
MLA Citation
Flynn, KE, Jeffery, DD, Keefe, FJ, Porter, LS, Shelby, RA, Fawzy, MR, Gosselin, TK, Reeve, BB, and Weinfurt, KP. "Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®)." Psychooncology 20.4 (April 2011): 378-386.
PMID
20878833
Source
epmc
Published In
Psycho-Oncology
Volume
20
Issue
4
Publish Date
2011
Start Page
378
End Page
386
DOI
10.1002/pon.1738

Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®).

Cancer and treatments for cancer affect specific aspects of sexual functioning and intimacy; however, limited qualitative work has been done in diverse cancer populations. As part of an effort to improve measurement of self-reported sexual functioning, we explored the scope and importance of sexual functioning and intimacy to patients across cancer sites and along the continuum of care.We conducted 16 diagnosis- and sex-specific focus groups with patients recruited from the Duke University tumor registry and oncology/hematology clinics (N=109). A trained note taker produced field notes summarizing the discussions. An independent auditor verified field notes against written transcripts. The content of the discussions was analyzed for major themes by two independent coders.Across all cancers, the most commonly discussed cancer- or treatment-related effects on sexual functioning and intimacy were fatigue, treatment-related hair loss, weight gain and organ loss or scarring. Additional barriers were unique to particular diagnoses, such as shortness of breath in lung cancer, gastrointestinal problems in colorectal cancers and incontinence in prostate cancer. Sexual functioning and intimacy were considered important to quality of life. While most effects of cancer were considered negative, many participants identified improvements to intimacy after cancer.Overall evaluations of satisfaction with sex life did not always correspond to specific aspects of functioning (e.g. erectile dysfunction), presenting a challenge to researchers aiming to measure sexual functioning as an outcome. Health-care providers should not assume that level of sexual impairment determines sexual satisfaction and should explore cancer patients' sexual concerns directly.

Authors
Flynn, KE; Jeffery, DD; Keefe, FJ; Porter, LS; Shelby, RA; Fawzy, MR; Gosselin, TK; Reeve, BB; Weinfurt, KP
MLA Citation
Flynn, KE, Jeffery, DD, Keefe, FJ, Porter, LS, Shelby, RA, Fawzy, MR, Gosselin, TK, Reeve, BB, and Weinfurt, KP. "Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®)." Psycho-oncology 20.4 (April 2011): 378-386.
PMID
20878833
Source
pubmed
Published In
Psycho-Oncology
Volume
20
Issue
4
Publish Date
2011
Start Page
378
End Page
386
DOI
10.1002/pon.1738

Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®).

Cancer and treatments for cancer affect specific aspects of sexual functioning and intimacy; however, limited qualitative work has been done in diverse cancer populations. As part of an effort to improve measurement of self-reported sexual functioning, we explored the scope and importance of sexual functioning and intimacy to patients across cancer sites and along the continuum of care.We conducted 16 diagnosis- and sex-specific focus groups with patients recruited from the Duke University tumor registry and oncology/hematology clinics (N=109). A trained note taker produced field notes summarizing the discussions. An independent auditor verified field notes against written transcripts. The content of the discussions was analyzed for major themes by two independent coders.Across all cancers, the most commonly discussed cancer- or treatment-related effects on sexual functioning and intimacy were fatigue, treatment-related hair loss, weight gain and organ loss or scarring. Additional barriers were unique to particular diagnoses, such as shortness of breath in lung cancer, gastrointestinal problems in colorectal cancers and incontinence in prostate cancer. Sexual functioning and intimacy were considered important to quality of life. While most effects of cancer were considered negative, many participants identified improvements to intimacy after cancer.Overall evaluations of satisfaction with sex life did not always correspond to specific aspects of functioning (e.g. erectile dysfunction), presenting a challenge to researchers aiming to measure sexual functioning as an outcome. Health-care providers should not assume that level of sexual impairment determines sexual satisfaction and should explore cancer patients' sexual concerns directly.

Authors
Flynn, KE; Jeffery, DD; Keefe, FJ; Porter, LS; Shelby, RA; Fawzy, MR; Gosselin, TK; Reeve, BB; Weinfurt, KP
MLA Citation
Flynn, KE, Jeffery, DD, Keefe, FJ, Porter, LS, Shelby, RA, Fawzy, MR, Gosselin, TK, Reeve, BB, and Weinfurt, KP. "Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®)." Psycho-oncology 20.4 (April 2011): 378-386.
PMID
20878833
Source
pubmed
Published In
Psycho-Oncology
Volume
20
Issue
4
Publish Date
2011
Start Page
378
End Page
386
DOI
10.1002/pon.1738

Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®).

Cancer and treatments for cancer affect specific aspects of sexual functioning and intimacy; however, limited qualitative work has been done in diverse cancer populations. As part of an effort to improve measurement of self-reported sexual functioning, we explored the scope and importance of sexual functioning and intimacy to patients across cancer sites and along the continuum of care.We conducted 16 diagnosis- and sex-specific focus groups with patients recruited from the Duke University tumor registry and oncology/hematology clinics (N=109). A trained note taker produced field notes summarizing the discussions. An independent auditor verified field notes against written transcripts. The content of the discussions was analyzed for major themes by two independent coders.Across all cancers, the most commonly discussed cancer- or treatment-related effects on sexual functioning and intimacy were fatigue, treatment-related hair loss, weight gain and organ loss or scarring. Additional barriers were unique to particular diagnoses, such as shortness of breath in lung cancer, gastrointestinal problems in colorectal cancers and incontinence in prostate cancer. Sexual functioning and intimacy were considered important to quality of life. While most effects of cancer were considered negative, many participants identified improvements to intimacy after cancer.Overall evaluations of satisfaction with sex life did not always correspond to specific aspects of functioning (e.g. erectile dysfunction), presenting a challenge to researchers aiming to measure sexual functioning as an outcome. Health-care providers should not assume that level of sexual impairment determines sexual satisfaction and should explore cancer patients' sexual concerns directly.

Authors
Flynn, KE; Jeffery, DD; Keefe, FJ; Porter, LS; Shelby, RA; Fawzy, MR; Gosselin, TK; Reeve, BB; Weinfurt, KP
MLA Citation
Flynn, KE, Jeffery, DD, Keefe, FJ, Porter, LS, Shelby, RA, Fawzy, MR, Gosselin, TK, Reeve, BB, and Weinfurt, KP. "Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®)." Psycho-oncology 20.4 (April 2011): 378-386.
PMID
20878833
Source
pubmed
Published In
Psycho-Oncology
Volume
20
Issue
4
Publish Date
2011
Start Page
378
End Page
386
DOI
10.1002/pon.1738

Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®).

Cancer and treatments for cancer affect specific aspects of sexual functioning and intimacy; however, limited qualitative work has been done in diverse cancer populations. As part of an effort to improve measurement of self-reported sexual functioning, we explored the scope and importance of sexual functioning and intimacy to patients across cancer sites and along the continuum of care.We conducted 16 diagnosis- and sex-specific focus groups with patients recruited from the Duke University tumor registry and oncology/hematology clinics (N=109). A trained note taker produced field notes summarizing the discussions. An independent auditor verified field notes against written transcripts. The content of the discussions was analyzed for major themes by two independent coders.Across all cancers, the most commonly discussed cancer- or treatment-related effects on sexual functioning and intimacy were fatigue, treatment-related hair loss, weight gain and organ loss or scarring. Additional barriers were unique to particular diagnoses, such as shortness of breath in lung cancer, gastrointestinal problems in colorectal cancers and incontinence in prostate cancer. Sexual functioning and intimacy were considered important to quality of life. While most effects of cancer were considered negative, many participants identified improvements to intimacy after cancer.Overall evaluations of satisfaction with sex life did not always correspond to specific aspects of functioning (e.g. erectile dysfunction), presenting a challenge to researchers aiming to measure sexual functioning as an outcome. Health-care providers should not assume that level of sexual impairment determines sexual satisfaction and should explore cancer patients' sexual concerns directly.

Authors
Flynn, KE; Jeffery, DD; Keefe, FJ; Porter, LS; Shelby, RA; Fawzy, MR; Gosselin, TK; Reeve, BB; Weinfurt, KP
MLA Citation
Flynn, KE, Jeffery, DD, Keefe, FJ, Porter, LS, Shelby, RA, Fawzy, MR, Gosselin, TK, Reeve, BB, and Weinfurt, KP. "Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®)." Psycho-oncology 20.4 (April 2011): 378-386.
PMID
20878833
Source
pubmed
Published In
Psycho-Oncology
Volume
20
Issue
4
Publish Date
2011
Start Page
378
End Page
386
DOI
10.1002/pon.1738

Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®).

Cancer and treatments for cancer affect specific aspects of sexual functioning and intimacy; however, limited qualitative work has been done in diverse cancer populations. As part of an effort to improve measurement of self-reported sexual functioning, we explored the scope and importance of sexual functioning and intimacy to patients across cancer sites and along the continuum of care.We conducted 16 diagnosis- and sex-specific focus groups with patients recruited from the Duke University tumor registry and oncology/hematology clinics (N=109). A trained note taker produced field notes summarizing the discussions. An independent auditor verified field notes against written transcripts. The content of the discussions was analyzed for major themes by two independent coders.Across all cancers, the most commonly discussed cancer- or treatment-related effects on sexual functioning and intimacy were fatigue, treatment-related hair loss, weight gain and organ loss or scarring. Additional barriers were unique to particular diagnoses, such as shortness of breath in lung cancer, gastrointestinal problems in colorectal cancers and incontinence in prostate cancer. Sexual functioning and intimacy were considered important to quality of life. While most effects of cancer were considered negative, many participants identified improvements to intimacy after cancer.Overall evaluations of satisfaction with sex life did not always correspond to specific aspects of functioning (e.g. erectile dysfunction), presenting a challenge to researchers aiming to measure sexual functioning as an outcome. Health-care providers should not assume that level of sexual impairment determines sexual satisfaction and should explore cancer patients' sexual concerns directly.

Authors
Flynn, KE; Jeffery, DD; Keefe, FJ; Porter, LS; Shelby, RA; Fawzy, MR; Gosselin, TK; Reeve, BB; Weinfurt, KP
MLA Citation
Flynn, KE, Jeffery, DD, Keefe, FJ, Porter, LS, Shelby, RA, Fawzy, MR, Gosselin, TK, Reeve, BB, and Weinfurt, KP. "Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®)." Psychooncology 20.4 (April 2011): 378-386.
PMID
20878833
Source
pubmed
Published In
Psycho-Oncology
Volume
20
Issue
4
Publish Date
2011
Start Page
378
End Page
386
DOI
10.1002/pon.1738

Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®).

Cancer and treatments for cancer affect specific aspects of sexual functioning and intimacy; however, limited qualitative work has been done in diverse cancer populations. As part of an effort to improve measurement of self-reported sexual functioning, we explored the scope and importance of sexual functioning and intimacy to patients across cancer sites and along the continuum of care.We conducted 16 diagnosis- and sex-specific focus groups with patients recruited from the Duke University tumor registry and oncology/hematology clinics (N=109). A trained note taker produced field notes summarizing the discussions. An independent auditor verified field notes against written transcripts. The content of the discussions was analyzed for major themes by two independent coders.Across all cancers, the most commonly discussed cancer- or treatment-related effects on sexual functioning and intimacy were fatigue, treatment-related hair loss, weight gain and organ loss or scarring. Additional barriers were unique to particular diagnoses, such as shortness of breath in lung cancer, gastrointestinal problems in colorectal cancers and incontinence in prostate cancer. Sexual functioning and intimacy were considered important to quality of life. While most effects of cancer were considered negative, many participants identified improvements to intimacy after cancer.Overall evaluations of satisfaction with sex life did not always correspond to specific aspects of functioning (e.g. erectile dysfunction), presenting a challenge to researchers aiming to measure sexual functioning as an outcome. Health-care providers should not assume that level of sexual impairment determines sexual satisfaction and should explore cancer patients' sexual concerns directly.

Authors
Flynn, KE; Jeffery, DD; Keefe, FJ; Porter, LS; Shelby, RA; Fawzy, MR; Gosselin, TK; Reeve, BB; Weinfurt, KP
MLA Citation
Flynn, KE, Jeffery, DD, Keefe, FJ, Porter, LS, Shelby, RA, Fawzy, MR, Gosselin, TK, Reeve, BB, and Weinfurt, KP. "Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®)." Psychooncology 20.4 (April 2011): 378-386.
PMID
20878833
Source
pubmed
Published In
Psycho-Oncology
Volume
20
Issue
4
Publish Date
2011
Start Page
378
End Page
386
DOI
10.1002/pon.1738

Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®).

Cancer and treatments for cancer affect specific aspects of sexual functioning and intimacy; however, limited qualitative work has been done in diverse cancer populations. As part of an effort to improve measurement of self-reported sexual functioning, we explored the scope and importance of sexual functioning and intimacy to patients across cancer sites and along the continuum of care.We conducted 16 diagnosis- and sex-specific focus groups with patients recruited from the Duke University tumor registry and oncology/hematology clinics (N=109). A trained note taker produced field notes summarizing the discussions. An independent auditor verified field notes against written transcripts. The content of the discussions was analyzed for major themes by two independent coders.Across all cancers, the most commonly discussed cancer- or treatment-related effects on sexual functioning and intimacy were fatigue, treatment-related hair loss, weight gain and organ loss or scarring. Additional barriers were unique to particular diagnoses, such as shortness of breath in lung cancer, gastrointestinal problems in colorectal cancers and incontinence in prostate cancer. Sexual functioning and intimacy were considered important to quality of life. While most effects of cancer were considered negative, many participants identified improvements to intimacy after cancer.Overall evaluations of satisfaction with sex life did not always correspond to specific aspects of functioning (e.g. erectile dysfunction), presenting a challenge to researchers aiming to measure sexual functioning as an outcome. Health-care providers should not assume that level of sexual impairment determines sexual satisfaction and should explore cancer patients' sexual concerns directly.

Authors
Flynn, KE; Jeffery, DD; Keefe, FJ; Porter, LS; Shelby, RA; Fawzy, MR; Gosselin, TK; Reeve, BB; Weinfurt, KP
MLA Citation
Flynn, KE, Jeffery, DD, Keefe, FJ, Porter, LS, Shelby, RA, Fawzy, MR, Gosselin, TK, Reeve, BB, and Weinfurt, KP. "Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®)." Psychooncology 20.4 (April 2011): 378-386.
PMID
20878833
Source
pubmed
Published In
Psycho-Oncology
Volume
20
Issue
4
Publish Date
2011
Start Page
378
End Page
386
DOI
10.1002/pon.1738

Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®).

Cancer and treatments for cancer affect specific aspects of sexual functioning and intimacy; however, limited qualitative work has been done in diverse cancer populations. As part of an effort to improve measurement of self-reported sexual functioning, we explored the scope and importance of sexual functioning and intimacy to patients across cancer sites and along the continuum of care.We conducted 16 diagnosis- and sex-specific focus groups with patients recruited from the Duke University tumor registry and oncology/hematology clinics (N=109). A trained note taker produced field notes summarizing the discussions. An independent auditor verified field notes against written transcripts. The content of the discussions was analyzed for major themes by two independent coders.Across all cancers, the most commonly discussed cancer- or treatment-related effects on sexual functioning and intimacy were fatigue, treatment-related hair loss, weight gain and organ loss or scarring. Additional barriers were unique to particular diagnoses, such as shortness of breath in lung cancer, gastrointestinal problems in colorectal cancers and incontinence in prostate cancer. Sexual functioning and intimacy were considered important to quality of life. While most effects of cancer were considered negative, many participants identified improvements to intimacy after cancer.Overall evaluations of satisfaction with sex life did not always correspond to specific aspects of functioning (e.g. erectile dysfunction), presenting a challenge to researchers aiming to measure sexual functioning as an outcome. Health-care providers should not assume that level of sexual impairment determines sexual satisfaction and should explore cancer patients' sexual concerns directly.

Authors
Flynn, KE; Jeffery, DD; Keefe, FJ; Porter, LS; Shelby, RA; Fawzy, MR; Gosselin, TK; Reeve, BB; Weinfurt, KP
MLA Citation
Flynn, KE, Jeffery, DD, Keefe, FJ, Porter, LS, Shelby, RA, Fawzy, MR, Gosselin, TK, Reeve, BB, and Weinfurt, KP. "Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®)." Psychooncology 20.4 (April 2011): 378-386.
PMID
20878833
Source
pubmed
Published In
Psycho-Oncology
Volume
20
Issue
4
Publish Date
2011
Start Page
378
End Page
386
DOI
10.1002/pon.1738

Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®).

Cancer and treatments for cancer affect specific aspects of sexual functioning and intimacy; however, limited qualitative work has been done in diverse cancer populations. As part of an effort to improve measurement of self-reported sexual functioning, we explored the scope and importance of sexual functioning and intimacy to patients across cancer sites and along the continuum of care.We conducted 16 diagnosis- and sex-specific focus groups with patients recruited from the Duke University tumor registry and oncology/hematology clinics (N=109). A trained note taker produced field notes summarizing the discussions. An independent auditor verified field notes against written transcripts. The content of the discussions was analyzed for major themes by two independent coders.Across all cancers, the most commonly discussed cancer- or treatment-related effects on sexual functioning and intimacy were fatigue, treatment-related hair loss, weight gain and organ loss or scarring. Additional barriers were unique to particular diagnoses, such as shortness of breath in lung cancer, gastrointestinal problems in colorectal cancers and incontinence in prostate cancer. Sexual functioning and intimacy were considered important to quality of life. While most effects of cancer were considered negative, many participants identified improvements to intimacy after cancer.Overall evaluations of satisfaction with sex life did not always correspond to specific aspects of functioning (e.g. erectile dysfunction), presenting a challenge to researchers aiming to measure sexual functioning as an outcome. Health-care providers should not assume that level of sexual impairment determines sexual satisfaction and should explore cancer patients' sexual concerns directly.

Authors
Flynn, KE; Jeffery, DD; Keefe, FJ; Porter, LS; Shelby, RA; Fawzy, MR; Gosselin, TK; Reeve, BB; Weinfurt, KP
MLA Citation
Flynn, KE, Jeffery, DD, Keefe, FJ, Porter, LS, Shelby, RA, Fawzy, MR, Gosselin, TK, Reeve, BB, and Weinfurt, KP. "Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®)." Psycho-oncology 20.4 (April 2011): 378-386.
PMID
20878833
Source
pubmed
Published In
Psycho-Oncology
Volume
20
Issue
4
Publish Date
2011
Start Page
378
End Page
386
DOI
10.1002/pon.1738

Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®).

Cancer and treatments for cancer affect specific aspects of sexual functioning and intimacy; however, limited qualitative work has been done in diverse cancer populations. As part of an effort to improve measurement of self-reported sexual functioning, we explored the scope and importance of sexual functioning and intimacy to patients across cancer sites and along the continuum of care.We conducted 16 diagnosis- and sex-specific focus groups with patients recruited from the Duke University tumor registry and oncology/hematology clinics (N=109). A trained note taker produced field notes summarizing the discussions. An independent auditor verified field notes against written transcripts. The content of the discussions was analyzed for major themes by two independent coders.Across all cancers, the most commonly discussed cancer- or treatment-related effects on sexual functioning and intimacy were fatigue, treatment-related hair loss, weight gain and organ loss or scarring. Additional barriers were unique to particular diagnoses, such as shortness of breath in lung cancer, gastrointestinal problems in colorectal cancers and incontinence in prostate cancer. Sexual functioning and intimacy were considered important to quality of life. While most effects of cancer were considered negative, many participants identified improvements to intimacy after cancer.Overall evaluations of satisfaction with sex life did not always correspond to specific aspects of functioning (e.g. erectile dysfunction), presenting a challenge to researchers aiming to measure sexual functioning as an outcome. Health-care providers should not assume that level of sexual impairment determines sexual satisfaction and should explore cancer patients' sexual concerns directly.

Authors
Flynn, KE; Jeffery, DD; Keefe, FJ; Porter, LS; Shelby, RA; Fawzy, MR; Gosselin, TK; Reeve, BB; Weinfurt, KP
MLA Citation
Flynn, KE, Jeffery, DD, Keefe, FJ, Porter, LS, Shelby, RA, Fawzy, MR, Gosselin, TK, Reeve, BB, and Weinfurt, KP. "Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®)." Psycho-oncology 20.4 (April 2011): 378-386.
PMID
20878833
Source
pubmed
Published In
Psycho-Oncology
Volume
20
Issue
4
Publish Date
2011
Start Page
378
End Page
386
DOI
10.1002/pon.1738

Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®).

Cancer and treatments for cancer affect specific aspects of sexual functioning and intimacy; however, limited qualitative work has been done in diverse cancer populations. As part of an effort to improve measurement of self-reported sexual functioning, we explored the scope and importance of sexual functioning and intimacy to patients across cancer sites and along the continuum of care.We conducted 16 diagnosis- and sex-specific focus groups with patients recruited from the Duke University tumor registry and oncology/hematology clinics (N=109). A trained note taker produced field notes summarizing the discussions. An independent auditor verified field notes against written transcripts. The content of the discussions was analyzed for major themes by two independent coders.Across all cancers, the most commonly discussed cancer- or treatment-related effects on sexual functioning and intimacy were fatigue, treatment-related hair loss, weight gain and organ loss or scarring. Additional barriers were unique to particular diagnoses, such as shortness of breath in lung cancer, gastrointestinal problems in colorectal cancers and incontinence in prostate cancer. Sexual functioning and intimacy were considered important to quality of life. While most effects of cancer were considered negative, many participants identified improvements to intimacy after cancer.Overall evaluations of satisfaction with sex life did not always correspond to specific aspects of functioning (e.g. erectile dysfunction), presenting a challenge to researchers aiming to measure sexual functioning as an outcome. Health-care providers should not assume that level of sexual impairment determines sexual satisfaction and should explore cancer patients' sexual concerns directly.

Authors
Flynn, KE; Jeffery, DD; Keefe, FJ; Porter, LS; Shelby, RA; Fawzy, MR; Gosselin, TK; Reeve, BB; Weinfurt, KP
MLA Citation
Flynn, KE, Jeffery, DD, Keefe, FJ, Porter, LS, Shelby, RA, Fawzy, MR, Gosselin, TK, Reeve, BB, and Weinfurt, KP. "Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®)." Psycho-oncology 20.4 (April 2011): 378-386.
PMID
20878833
Source
pubmed
Published In
Psycho-Oncology
Volume
20
Issue
4
Publish Date
2011
Start Page
378
End Page
386
DOI
10.1002/pon.1738

Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®).

Cancer and treatments for cancer affect specific aspects of sexual functioning and intimacy; however, limited qualitative work has been done in diverse cancer populations. As part of an effort to improve measurement of self-reported sexual functioning, we explored the scope and importance of sexual functioning and intimacy to patients across cancer sites and along the continuum of care.We conducted 16 diagnosis- and sex-specific focus groups with patients recruited from the Duke University tumor registry and oncology/hematology clinics (N=109). A trained note taker produced field notes summarizing the discussions. An independent auditor verified field notes against written transcripts. The content of the discussions was analyzed for major themes by two independent coders.Across all cancers, the most commonly discussed cancer- or treatment-related effects on sexual functioning and intimacy were fatigue, treatment-related hair loss, weight gain and organ loss or scarring. Additional barriers were unique to particular diagnoses, such as shortness of breath in lung cancer, gastrointestinal problems in colorectal cancers and incontinence in prostate cancer. Sexual functioning and intimacy were considered important to quality of life. While most effects of cancer were considered negative, many participants identified improvements to intimacy after cancer.Overall evaluations of satisfaction with sex life did not always correspond to specific aspects of functioning (e.g. erectile dysfunction), presenting a challenge to researchers aiming to measure sexual functioning as an outcome. Health-care providers should not assume that level of sexual impairment determines sexual satisfaction and should explore cancer patients' sexual concerns directly.

Authors
Flynn, KE; Jeffery, DD; Keefe, FJ; Porter, LS; Shelby, RA; Fawzy, MR; Gosselin, TK; Reeve, BB; Weinfurt, KP
MLA Citation
Flynn, KE, Jeffery, DD, Keefe, FJ, Porter, LS, Shelby, RA, Fawzy, MR, Gosselin, TK, Reeve, BB, and Weinfurt, KP. "Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®)." Psycho-oncology 20.4 (April 2011): 378-386.
PMID
20878833
Source
pubmed
Published In
Psycho-Oncology
Volume
20
Issue
4
Publish Date
2011
Start Page
378
End Page
386
DOI
10.1002/pon.1738

Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®).

Cancer and treatments for cancer affect specific aspects of sexual functioning and intimacy; however, limited qualitative work has been done in diverse cancer populations. As part of an effort to improve measurement of self-reported sexual functioning, we explored the scope and importance of sexual functioning and intimacy to patients across cancer sites and along the continuum of care.We conducted 16 diagnosis- and sex-specific focus groups with patients recruited from the Duke University tumor registry and oncology/hematology clinics (N=109). A trained note taker produced field notes summarizing the discussions. An independent auditor verified field notes against written transcripts. The content of the discussions was analyzed for major themes by two independent coders.Across all cancers, the most commonly discussed cancer- or treatment-related effects on sexual functioning and intimacy were fatigue, treatment-related hair loss, weight gain and organ loss or scarring. Additional barriers were unique to particular diagnoses, such as shortness of breath in lung cancer, gastrointestinal problems in colorectal cancers and incontinence in prostate cancer. Sexual functioning and intimacy were considered important to quality of life. While most effects of cancer were considered negative, many participants identified improvements to intimacy after cancer.Overall evaluations of satisfaction with sex life did not always correspond to specific aspects of functioning (e.g. erectile dysfunction), presenting a challenge to researchers aiming to measure sexual functioning as an outcome. Health-care providers should not assume that level of sexual impairment determines sexual satisfaction and should explore cancer patients' sexual concerns directly.

Authors
Flynn, KE; Jeffery, DD; Keefe, FJ; Porter, LS; Shelby, RA; Fawzy, MR; Gosselin, TK; Reeve, BB; Weinfurt, KP
MLA Citation
Flynn, KE, Jeffery, DD, Keefe, FJ, Porter, LS, Shelby, RA, Fawzy, MR, Gosselin, TK, Reeve, BB, and Weinfurt, KP. "Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®)." Psychooncology 20.4 (April 2011): 378-386.
PMID
20878833
Source
pubmed
Published In
Psycho-Oncology
Volume
20
Issue
4
Publish Date
2011
Start Page
378
End Page
386
DOI
10.1002/pon.1738

Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®).

Cancer and treatments for cancer affect specific aspects of sexual functioning and intimacy; however, limited qualitative work has been done in diverse cancer populations. As part of an effort to improve measurement of self-reported sexual functioning, we explored the scope and importance of sexual functioning and intimacy to patients across cancer sites and along the continuum of care.We conducted 16 diagnosis- and sex-specific focus groups with patients recruited from the Duke University tumor registry and oncology/hematology clinics (N=109). A trained note taker produced field notes summarizing the discussions. An independent auditor verified field notes against written transcripts. The content of the discussions was analyzed for major themes by two independent coders.Across all cancers, the most commonly discussed cancer- or treatment-related effects on sexual functioning and intimacy were fatigue, treatment-related hair loss, weight gain and organ loss or scarring. Additional barriers were unique to particular diagnoses, such as shortness of breath in lung cancer, gastrointestinal problems in colorectal cancers and incontinence in prostate cancer. Sexual functioning and intimacy were considered important to quality of life. While most effects of cancer were considered negative, many participants identified improvements to intimacy after cancer.Overall evaluations of satisfaction with sex life did not always correspond to specific aspects of functioning (e.g. erectile dysfunction), presenting a challenge to researchers aiming to measure sexual functioning as an outcome. Health-care providers should not assume that level of sexual impairment determines sexual satisfaction and should explore cancer patients' sexual concerns directly.

Authors
Flynn, KE; Jeffery, DD; Keefe, FJ; Porter, LS; Shelby, RA; Fawzy, MR; Gosselin, TK; Reeve, BB; Weinfurt, KP
MLA Citation
Flynn, KE, Jeffery, DD, Keefe, FJ, Porter, LS, Shelby, RA, Fawzy, MR, Gosselin, TK, Reeve, BB, and Weinfurt, KP. "Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®)." Psychooncology 20.4 (April 2011): 378-386.
PMID
20878833
Source
pubmed
Published In
Psycho-Oncology
Volume
20
Issue
4
Publish Date
2011
Start Page
378
End Page
386
DOI
10.1002/pon.1738

Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®).

Cancer and treatments for cancer affect specific aspects of sexual functioning and intimacy; however, limited qualitative work has been done in diverse cancer populations. As part of an effort to improve measurement of self-reported sexual functioning, we explored the scope and importance of sexual functioning and intimacy to patients across cancer sites and along the continuum of care.We conducted 16 diagnosis- and sex-specific focus groups with patients recruited from the Duke University tumor registry and oncology/hematology clinics (N=109). A trained note taker produced field notes summarizing the discussions. An independent auditor verified field notes against written transcripts. The content of the discussions was analyzed for major themes by two independent coders.Across all cancers, the most commonly discussed cancer- or treatment-related effects on sexual functioning and intimacy were fatigue, treatment-related hair loss, weight gain and organ loss or scarring. Additional barriers were unique to particular diagnoses, such as shortness of breath in lung cancer, gastrointestinal problems in colorectal cancers and incontinence in prostate cancer. Sexual functioning and intimacy were considered important to quality of life. While most effects of cancer were considered negative, many participants identified improvements to intimacy after cancer.Overall evaluations of satisfaction with sex life did not always correspond to specific aspects of functioning (e.g. erectile dysfunction), presenting a challenge to researchers aiming to measure sexual functioning as an outcome. Health-care providers should not assume that level of sexual impairment determines sexual satisfaction and should explore cancer patients' sexual concerns directly.

Authors
Flynn, KE; Jeffery, DD; Keefe, FJ; Porter, LS; Shelby, RA; Fawzy, MR; Gosselin, TK; Reeve, BB; Weinfurt, KP
MLA Citation
Flynn, KE, Jeffery, DD, Keefe, FJ, Porter, LS, Shelby, RA, Fawzy, MR, Gosselin, TK, Reeve, BB, and Weinfurt, KP. "Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®)." Psychooncology 20.4 (April 2011): 378-386.
PMID
20878833
Source
pubmed
Published In
Psycho-Oncology
Volume
20
Issue
4
Publish Date
2011
Start Page
378
End Page
386
DOI
10.1002/pon.1738

Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®).

Cancer and treatments for cancer affect specific aspects of sexual functioning and intimacy; however, limited qualitative work has been done in diverse cancer populations. As part of an effort to improve measurement of self-reported sexual functioning, we explored the scope and importance of sexual functioning and intimacy to patients across cancer sites and along the continuum of care.We conducted 16 diagnosis- and sex-specific focus groups with patients recruited from the Duke University tumor registry and oncology/hematology clinics (N=109). A trained note taker produced field notes summarizing the discussions. An independent auditor verified field notes against written transcripts. The content of the discussions was analyzed for major themes by two independent coders.Across all cancers, the most commonly discussed cancer- or treatment-related effects on sexual functioning and intimacy were fatigue, treatment-related hair loss, weight gain and organ loss or scarring. Additional barriers were unique to particular diagnoses, such as shortness of breath in lung cancer, gastrointestinal problems in colorectal cancers and incontinence in prostate cancer. Sexual functioning and intimacy were considered important to quality of life. While most effects of cancer were considered negative, many participants identified improvements to intimacy after cancer.Overall evaluations of satisfaction with sex life did not always correspond to specific aspects of functioning (e.g. erectile dysfunction), presenting a challenge to researchers aiming to measure sexual functioning as an outcome. Health-care providers should not assume that level of sexual impairment determines sexual satisfaction and should explore cancer patients' sexual concerns directly.

Authors
Flynn, KE; Jeffery, DD; Keefe, FJ; Porter, LS; Shelby, RA; Fawzy, MR; Gosselin, TK; Reeve, BB; Weinfurt, KP
MLA Citation
Flynn, KE, Jeffery, DD, Keefe, FJ, Porter, LS, Shelby, RA, Fawzy, MR, Gosselin, TK, Reeve, BB, and Weinfurt, KP. "Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®)." Psychooncology 20.4 (April 2011): 378-386.
PMID
20878833
Source
pubmed
Published In
Psycho-Oncology
Volume
20
Issue
4
Publish Date
2011
Start Page
378
End Page
386
DOI
10.1002/pon.1738

Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®).

OBJECTIVE: Cancer and treatments for cancer affect specific aspects of sexual functioning and intimacy; however, limited qualitative work has been done in diverse cancer populations. As part of an effort to improve measurement of self-reported sexual functioning, we explored the scope and importance of sexual functioning and intimacy to patients across cancer sites and along the continuum of care. METHODS: We conducted 16 diagnosis- and sex-specific focus groups with patients recruited from the Duke University tumor registry and oncology/hematology clinics (N=109). A trained note taker produced field notes summarizing the discussions. An independent auditor verified field notes against written transcripts. The content of the discussions was analyzed for major themes by two independent coders. RESULTS: Across all cancers, the most commonly discussed cancer- or treatment-related effects on sexual functioning and intimacy were fatigue, treatment-related hair loss, weight gain and organ loss or scarring. Additional barriers were unique to particular diagnoses, such as shortness of breath in lung cancer, gastrointestinal problems in colorectal cancers and incontinence in prostate cancer. Sexual functioning and intimacy were considered important to quality of life. While most effects of cancer were considered negative, many participants identified improvements to intimacy after cancer. CONCLUSION: Overall evaluations of satisfaction with sex life did not always correspond to specific aspects of functioning (e.g. erectile dysfunction), presenting a challenge to researchers aiming to measure sexual functioning as an outcome. Health-care providers should not assume that level of sexual impairment determines sexual satisfaction and should explore cancer patients' sexual concerns directly.

Authors
Flynn, KE; Jeffery, DD; Keefe, FJ; Porter, LS; Shelby, RA; Fawzy, MR; Gosselin, TK; Reeve, BB; Weinfurt, KP
MLA Citation
Flynn, KE, Jeffery, DD, Keefe, FJ, Porter, LS, Shelby, RA, Fawzy, MR, Gosselin, TK, Reeve, BB, and Weinfurt, KP. "Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®)." Psycho-oncology 20.4 (April 2011): 378-386.
PMID
20878833
Source
epmc
Published In
Psycho-Oncology
Volume
20
Issue
4
Publish Date
2011
Start Page
378
End Page
386
DOI
10.1002/pon.1738

Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®).

OBJECTIVE: Cancer and treatments for cancer affect specific aspects of sexual functioning and intimacy; however, limited qualitative work has been done in diverse cancer populations. As part of an effort to improve measurement of self-reported sexual functioning, we explored the scope and importance of sexual functioning and intimacy to patients across cancer sites and along the continuum of care. METHODS: We conducted 16 diagnosis- and sex-specific focus groups with patients recruited from the Duke University tumor registry and oncology/hematology clinics (N=109). A trained note taker produced field notes summarizing the discussions. An independent auditor verified field notes against written transcripts. The content of the discussions was analyzed for major themes by two independent coders. RESULTS: Across all cancers, the most commonly discussed cancer- or treatment-related effects on sexual functioning and intimacy were fatigue, treatment-related hair loss, weight gain and organ loss or scarring. Additional barriers were unique to particular diagnoses, such as shortness of breath in lung cancer, gastrointestinal problems in colorectal cancers and incontinence in prostate cancer. Sexual functioning and intimacy were considered important to quality of life. While most effects of cancer were considered negative, many participants identified improvements to intimacy after cancer. CONCLUSION: Overall evaluations of satisfaction with sex life did not always correspond to specific aspects of functioning (e.g. erectile dysfunction), presenting a challenge to researchers aiming to measure sexual functioning as an outcome. Health-care providers should not assume that level of sexual impairment determines sexual satisfaction and should explore cancer patients' sexual concerns directly.

Authors
Flynn, KE; Jeffery, DD; Keefe, FJ; Porter, LS; Shelby, RA; Fawzy, MR; Gosselin, TK; Reeve, BB; Weinfurt, KP
MLA Citation
Flynn, KE, Jeffery, DD, Keefe, FJ, Porter, LS, Shelby, RA, Fawzy, MR, Gosselin, TK, Reeve, BB, and Weinfurt, KP. "Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®)." Psycho-oncology 20.4 (April 2011): 378-386.
PMID
20878833
Source
epmc
Published In
Psycho-Oncology
Volume
20
Issue
4
Publish Date
2011
Start Page
378
End Page
386
DOI
10.1002/pon.1738

Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®).

OBJECTIVE: Cancer and treatments for cancer affect specific aspects of sexual functioning and intimacy; however, limited qualitative work has been done in diverse cancer populations. As part of an effort to improve measurement of self-reported sexual functioning, we explored the scope and importance of sexual functioning and intimacy to patients across cancer sites and along the continuum of care. METHODS: We conducted 16 diagnosis- and sex-specific focus groups with patients recruited from the Duke University tumor registry and oncology/hematology clinics (N=109). A trained note taker produced field notes summarizing the discussions. An independent auditor verified field notes against written transcripts. The content of the discussions was analyzed for major themes by two independent coders. RESULTS: Across all cancers, the most commonly discussed cancer- or treatment-related effects on sexual functioning and intimacy were fatigue, treatment-related hair loss, weight gain and organ loss or scarring. Additional barriers were unique to particular diagnoses, such as shortness of breath in lung cancer, gastrointestinal problems in colorectal cancers and incontinence in prostate cancer. Sexual functioning and intimacy were considered important to quality of life. While most effects of cancer were considered negative, many participants identified improvements to intimacy after cancer. CONCLUSION: Overall evaluations of satisfaction with sex life did not always correspond to specific aspects of functioning (e.g. erectile dysfunction), presenting a challenge to researchers aiming to measure sexual functioning as an outcome. Health-care providers should not assume that level of sexual impairment determines sexual satisfaction and should explore cancer patients' sexual concerns directly.

Authors
Flynn, KE; Jeffery, DD; Keefe, FJ; Porter, LS; Shelby, RA; Fawzy, MR; Gosselin, TK; Reeve, BB; Weinfurt, KP
MLA Citation
Flynn, KE, Jeffery, DD, Keefe, FJ, Porter, LS, Shelby, RA, Fawzy, MR, Gosselin, TK, Reeve, BB, and Weinfurt, KP. "Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®)." Psycho-oncology 20.4 (April 2011): 378-386.
PMID
20878833
Source
epmc
Published In
Psycho-Oncology
Volume
20
Issue
4
Publish Date
2011
Start Page
378
End Page
386
DOI
10.1002/pon.1738

Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®).

OBJECTIVE: Cancer and treatments for cancer affect specific aspects of sexual functioning and intimacy; however, limited qualitative work has been done in diverse cancer populations. As part of an effort to improve measurement of self-reported sexual functioning, we explored the scope and importance of sexual functioning and intimacy to patients across cancer sites and along the continuum of care. METHODS: We conducted 16 diagnosis- and sex-specific focus groups with patients recruited from the Duke University tumor registry and oncology/hematology clinics (N=109). A trained note taker produced field notes summarizing the discussions. An independent auditor verified field notes against written transcripts. The content of the discussions was analyzed for major themes by two independent coders. RESULTS: Across all cancers, the most commonly discussed cancer- or treatment-related effects on sexual functioning and intimacy were fatigue, treatment-related hair loss, weight gain and organ loss or scarring. Additional barriers were unique to particular diagnoses, such as shortness of breath in lung cancer, gastrointestinal problems in colorectal cancers and incontinence in prostate cancer. Sexual functioning and intimacy were considered important to quality of life. While most effects of cancer were considered negative, many participants identified improvements to intimacy after cancer. CONCLUSION: Overall evaluations of satisfaction with sex life did not always correspond to specific aspects of functioning (e.g. erectile dysfunction), presenting a challenge to researchers aiming to measure sexual functioning as an outcome. Health-care providers should not assume that level of sexual impairment determines sexual satisfaction and should explore cancer patients' sexual concerns directly.

Authors
Flynn, KE; Jeffery, DD; Keefe, FJ; Porter, LS; Shelby, RA; Fawzy, MR; Gosselin, TK; Reeve, BB; Weinfurt, KP
MLA Citation
Flynn, KE, Jeffery, DD, Keefe, FJ, Porter, LS, Shelby, RA, Fawzy, MR, Gosselin, TK, Reeve, BB, and Weinfurt, KP. "Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®)." Psycho-oncology 20.4 (April 2011): 378-386.
PMID
20878833
Source
epmc
Published In
Psycho-Oncology
Volume
20
Issue
4
Publish Date
2011
Start Page
378
End Page
386
DOI
10.1002/pon.1738

Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®).

OBJECTIVE: Cancer and treatments for cancer affect specific aspects of sexual functioning and intimacy; however, limited qualitative work has been done in diverse cancer populations. As part of an effort to improve measurement of self-reported sexual functioning, we explored the scope and importance of sexual functioning and intimacy to patients across cancer sites and along the continuum of care. METHODS: We conducted 16 diagnosis- and sex-specific focus groups with patients recruited from the Duke University tumor registry and oncology/hematology clinics (N=109). A trained note taker produced field notes summarizing the discussions. An independent auditor verified field notes against written transcripts. The content of the discussions was analyzed for major themes by two independent coders. RESULTS: Across all cancers, the most commonly discussed cancer- or treatment-related effects on sexual functioning and intimacy were fatigue, treatment-related hair loss, weight gain and organ loss or scarring. Additional barriers were unique to particular diagnoses, such as shortness of breath in lung cancer, gastrointestinal problems in colorectal cancers and incontinence in prostate cancer. Sexual functioning and intimacy were considered important to quality of life. While most effects of cancer were considered negative, many participants identified improvements to intimacy after cancer. CONCLUSION: Overall evaluations of satisfaction with sex life did not always correspond to specific aspects of functioning (e.g. erectile dysfunction), presenting a challenge to researchers aiming to measure sexual functioning as an outcome. Health-care providers should not assume that level of sexual impairment determines sexual satisfaction and should explore cancer patients' sexual concerns directly.

Authors
Flynn, KE; Jeffery, DD; Keefe, FJ; Porter, LS; Shelby, RA; Fawzy, MR; Gosselin, TK; Reeve, BB; Weinfurt, KP
MLA Citation
Flynn, KE, Jeffery, DD, Keefe, FJ, Porter, LS, Shelby, RA, Fawzy, MR, Gosselin, TK, Reeve, BB, and Weinfurt, KP. "Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®)." Psychooncology 20.4 (April 2011): 378-386.
PMID
20878833
Source
epmc
Published In
Psycho-Oncology
Volume
20
Issue
4
Publish Date
2011
Start Page
378
End Page
386
DOI
10.1002/pon.1738

Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®).

OBJECTIVE: Cancer and treatments for cancer affect specific aspects of sexual functioning and intimacy; however, limited qualitative work has been done in diverse cancer populations. As part of an effort to improve measurement of self-reported sexual functioning, we explored the scope and importance of sexual functioning and intimacy to patients across cancer sites and along the continuum of care. METHODS: We conducted 16 diagnosis- and sex-specific focus groups with patients recruited from the Duke University tumor registry and oncology/hematology clinics (N=109). A trained note taker produced field notes summarizing the discussions. An independent auditor verified field notes against written transcripts. The content of the discussions was analyzed for major themes by two independent coders. RESULTS: Across all cancers, the most commonly discussed cancer- or treatment-related effects on sexual functioning and intimacy were fatigue, treatment-related hair loss, weight gain and organ loss or scarring. Additional barriers were unique to particular diagnoses, such as shortness of breath in lung cancer, gastrointestinal problems in colorectal cancers and incontinence in prostate cancer. Sexual functioning and intimacy were considered important to quality of life. While most effects of cancer were considered negative, many participants identified improvements to intimacy after cancer. CONCLUSION: Overall evaluations of satisfaction with sex life did not always correspond to specific aspects of functioning (e.g. erectile dysfunction), presenting a challenge to researchers aiming to measure sexual functioning as an outcome. Health-care providers should not assume that level of sexual impairment determines sexual satisfaction and should explore cancer patients' sexual concerns directly.

Authors
Flynn, KE; Jeffery, DD; Keefe, FJ; Porter, LS; Shelby, RA; Fawzy, MR; Gosselin, TK; Reeve, BB; Weinfurt, KP
MLA Citation
Flynn, KE, Jeffery, DD, Keefe, FJ, Porter, LS, Shelby, RA, Fawzy, MR, Gosselin, TK, Reeve, BB, and Weinfurt, KP. "Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®)." Psychooncology 20.4 (April 2011): 378-386.
PMID
20878833
Source
epmc
Published In
Psycho-Oncology
Volume
20
Issue
4
Publish Date
2011
Start Page
378
End Page
386
DOI
10.1002/pon.1738

Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®).

OBJECTIVE: Cancer and treatments for cancer affect specific aspects of sexual functioning and intimacy; however, limited qualitative work has been done in diverse cancer populations. As part of an effort to improve measurement of self-reported sexual functioning, we explored the scope and importance of sexual functioning and intimacy to patients across cancer sites and along the continuum of care. METHODS: We conducted 16 diagnosis- and sex-specific focus groups with patients recruited from the Duke University tumor registry and oncology/hematology clinics (N=109). A trained note taker produced field notes summarizing the discussions. An independent auditor verified field notes against written transcripts. The content of the discussions was analyzed for major themes by two independent coders. RESULTS: Across all cancers, the most commonly discussed cancer- or treatment-related effects on sexual functioning and intimacy were fatigue, treatment-related hair loss, weight gain and organ loss or scarring. Additional barriers were unique to particular diagnoses, such as shortness of breath in lung cancer, gastrointestinal problems in colorectal cancers and incontinence in prostate cancer. Sexual functioning and intimacy were considered important to quality of life. While most effects of cancer were considered negative, many participants identified improvements to intimacy after cancer. CONCLUSION: Overall evaluations of satisfaction with sex life did not always correspond to specific aspects of functioning (e.g. erectile dysfunction), presenting a challenge to researchers aiming to measure sexual functioning as an outcome. Health-care providers should not assume that level of sexual impairment determines sexual satisfaction and should explore cancer patients' sexual concerns directly.

Authors
Flynn, KE; Jeffery, DD; Keefe, FJ; Porter, LS; Shelby, RA; Fawzy, MR; Gosselin, TK; Reeve, BB; Weinfurt, KP
MLA Citation
Flynn, KE, Jeffery, DD, Keefe, FJ, Porter, LS, Shelby, RA, Fawzy, MR, Gosselin, TK, Reeve, BB, and Weinfurt, KP. "Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®)." Psychooncology 20.4 (April 2011): 378-386.
PMID
20878833
Source
epmc
Published In
Psycho-Oncology
Volume
20
Issue
4
Publish Date
2011
Start Page
378
End Page
386
DOI
10.1002/pon.1738

Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®).

OBJECTIVE: Cancer and treatments for cancer affect specific aspects of sexual functioning and intimacy; however, limited qualitative work has been done in diverse cancer populations. As part of an effort to improve measurement of self-reported sexual functioning, we explored the scope and importance of sexual functioning and intimacy to patients across cancer sites and along the continuum of care. METHODS: We conducted 16 diagnosis- and sex-specific focus groups with patients recruited from the Duke University tumor registry and oncology/hematology clinics (N=109). A trained note taker produced field notes summarizing the discussions. An independent auditor verified field notes against written transcripts. The content of the discussions was analyzed for major themes by two independent coders. RESULTS: Across all cancers, the most commonly discussed cancer- or treatment-related effects on sexual functioning and intimacy were fatigue, treatment-related hair loss, weight gain and organ loss or scarring. Additional barriers were unique to particular diagnoses, such as shortness of breath in lung cancer, gastrointestinal problems in colorectal cancers and incontinence in prostate cancer. Sexual functioning and intimacy were considered important to quality of life. While most effects of cancer were considered negative, many participants identified improvements to intimacy after cancer. CONCLUSION: Overall evaluations of satisfaction with sex life did not always correspond to specific aspects of functioning (e.g. erectile dysfunction), presenting a challenge to researchers aiming to measure sexual functioning as an outcome. Health-care providers should not assume that level of sexual impairment determines sexual satisfaction and should explore cancer patients' sexual concerns directly.

Authors
Flynn, KE; Jeffery, DD; Keefe, FJ; Porter, LS; Shelby, RA; Fawzy, MR; Gosselin, TK; Reeve, BB; Weinfurt, KP
MLA Citation
Flynn, KE, Jeffery, DD, Keefe, FJ, Porter, LS, Shelby, RA, Fawzy, MR, Gosselin, TK, Reeve, BB, and Weinfurt, KP. "Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®)." Psychooncology 20.4 (April 2011): 378-386.
PMID
20878833
Source
epmc
Published In
Psycho-Oncology
Volume
20
Issue
4
Publish Date
2011
Start Page
378
End Page
386
DOI
10.1002/pon.1738

Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®).

OBJECTIVE: Cancer and treatments for cancer affect specific aspects of sexual functioning and intimacy; however, limited qualitative work has been done in diverse cancer populations. As part of an effort to improve measurement of self-reported sexual functioning, we explored the scope and importance of sexual functioning and intimacy to patients across cancer sites and along the continuum of care. METHODS: We conducted 16 diagnosis- and sex-specific focus groups with patients recruited from the Duke University tumor registry and oncology/hematology clinics (N=109). A trained note taker produced field notes summarizing the discussions. An independent auditor verified field notes against written transcripts. The content of the discussions was analyzed for major themes by two independent coders. RESULTS: Across all cancers, the most commonly discussed cancer- or treatment-related effects on sexual functioning and intimacy were fatigue, treatment-related hair loss, weight gain and organ loss or scarring. Additional barriers were unique to particular diagnoses, such as shortness of breath in lung cancer, gastrointestinal problems in colorectal cancers and incontinence in prostate cancer. Sexual functioning and intimacy were considered important to quality of life. While most effects of cancer were considered negative, many participants identified improvements to intimacy after cancer. CONCLUSION: Overall evaluations of satisfaction with sex life did not always correspond to specific aspects of functioning (e.g. erectile dysfunction), presenting a challenge to researchers aiming to measure sexual functioning as an outcome. Health-care providers should not assume that level of sexual impairment determines sexual satisfaction and should explore cancer patients' sexual concerns directly.

Authors
Flynn, KE; Jeffery, DD; Keefe, FJ; Porter, LS; Shelby, RA; Fawzy, MR; Gosselin, TK; Reeve, BB; Weinfurt, KP
MLA Citation
Flynn, KE, Jeffery, DD, Keefe, FJ, Porter, LS, Shelby, RA, Fawzy, MR, Gosselin, TK, Reeve, BB, and Weinfurt, KP. "Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®)." Psycho-oncology 20.4 (April 2011): 378-386.
PMID
20878833
Source
epmc
Published In
Psycho-Oncology
Volume
20
Issue
4
Publish Date
2011
Start Page
378
End Page
386
DOI
10.1002/pon.1738

Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®).

OBJECTIVE: Cancer and treatments for cancer affect specific aspects of sexual functioning and intimacy; however, limited qualitative work has been done in diverse cancer populations. As part of an effort to improve measurement of self-reported sexual functioning, we explored the scope and importance of sexual functioning and intimacy to patients across cancer sites and along the continuum of care. METHODS: We conducted 16 diagnosis- and sex-specific focus groups with patients recruited from the Duke University tumor registry and oncology/hematology clinics (N=109). A trained note taker produced field notes summarizing the discussions. An independent auditor verified field notes against written transcripts. The content of the discussions was analyzed for major themes by two independent coders. RESULTS: Across all cancers, the most commonly discussed cancer- or treatment-related effects on sexual functioning and intimacy were fatigue, treatment-related hair loss, weight gain and organ loss or scarring. Additional barriers were unique to particular diagnoses, such as shortness of breath in lung cancer, gastrointestinal problems in colorectal cancers and incontinence in prostate cancer. Sexual functioning and intimacy were considered important to quality of life. While most effects of cancer were considered negative, many participants identified improvements to intimacy after cancer. CONCLUSION: Overall evaluations of satisfaction with sex life did not always correspond to specific aspects of functioning (e.g. erectile dysfunction), presenting a challenge to researchers aiming to measure sexual functioning as an outcome. Health-care providers should not assume that level of sexual impairment determines sexual satisfaction and should explore cancer patients' sexual concerns directly.

Authors
Flynn, KE; Jeffery, DD; Keefe, FJ; Porter, LS; Shelby, RA; Fawzy, MR; Gosselin, TK; Reeve, BB; Weinfurt, KP
MLA Citation
Flynn, KE, Jeffery, DD, Keefe, FJ, Porter, LS, Shelby, RA, Fawzy, MR, Gosselin, TK, Reeve, BB, and Weinfurt, KP. "Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®)." Psycho-oncology 20.4 (April 2011): 378-386.
PMID
20878833
Source
epmc
Published In
Psycho-Oncology
Volume
20
Issue
4
Publish Date
2011
Start Page
378
End Page
386
DOI
10.1002/pon.1738

Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®).

OBJECTIVE: Cancer and treatments for cancer affect specific aspects of sexual functioning and intimacy; however, limited qualitative work has been done in diverse cancer populations. As part of an effort to improve measurement of self-reported sexual functioning, we explored the scope and importance of sexual functioning and intimacy to patients across cancer sites and along the continuum of care. METHODS: We conducted 16 diagnosis- and sex-specific focus groups with patients recruited from the Duke University tumor registry and oncology/hematology clinics (N=109). A trained note taker produced field notes summarizing the discussions. An independent auditor verified field notes against written transcripts. The content of the discussions was analyzed for major themes by two independent coders. RESULTS: Across all cancers, the most commonly discussed cancer- or treatment-related effects on sexual functioning and intimacy were fatigue, treatment-related hair loss, weight gain and organ loss or scarring. Additional barriers were unique to particular diagnoses, such as shortness of breath in lung cancer, gastrointestinal problems in colorectal cancers and incontinence in prostate cancer. Sexual functioning and intimacy were considered important to quality of life. While most effects of cancer were considered negative, many participants identified improvements to intimacy after cancer. CONCLUSION: Overall evaluations of satisfaction with sex life did not always correspond to specific aspects of functioning (e.g. erectile dysfunction), presenting a challenge to researchers aiming to measure sexual functioning as an outcome. Health-care providers should not assume that level of sexual impairment determines sexual satisfaction and should explore cancer patients' sexual concerns directly.

Authors
Flynn, KE; Jeffery, DD; Keefe, FJ; Porter, LS; Shelby, RA; Fawzy, MR; Gosselin, TK; Reeve, BB; Weinfurt, KP
MLA Citation
Flynn, KE, Jeffery, DD, Keefe, FJ, Porter, LS, Shelby, RA, Fawzy, MR, Gosselin, TK, Reeve, BB, and Weinfurt, KP. "Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®)." Psycho-oncology 20.4 (April 2011): 378-386.
PMID
20878833
Source
epmc
Published In
Psycho-Oncology
Volume
20
Issue
4
Publish Date
2011
Start Page
378
End Page
386
DOI
10.1002/pon.1738

Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®).

OBJECTIVE: Cancer and treatments for cancer affect specific aspects of sexual functioning and intimacy; however, limited qualitative work has been done in diverse cancer populations. As part of an effort to improve measurement of self-reported sexual functioning, we explored the scope and importance of sexual functioning and intimacy to patients across cancer sites and along the continuum of care. METHODS: We conducted 16 diagnosis- and sex-specific focus groups with patients recruited from the Duke University tumor registry and oncology/hematology clinics (N=109). A trained note taker produced field notes summarizing the discussions. An independent auditor verified field notes against written transcripts. The content of the discussions was analyzed for major themes by two independent coders. RESULTS: Across all cancers, the most commonly discussed cancer- or treatment-related effects on sexual functioning and intimacy were fatigue, treatment-related hair loss, weight gain and organ loss or scarring. Additional barriers were unique to particular diagnoses, such as shortness of breath in lung cancer, gastrointestinal problems in colorectal cancers and incontinence in prostate cancer. Sexual functioning and intimacy were considered important to quality of life. While most effects of cancer were considered negative, many participants identified improvements to intimacy after cancer. CONCLUSION: Overall evaluations of satisfaction with sex life did not always correspond to specific aspects of functioning (e.g. erectile dysfunction), presenting a challenge to researchers aiming to measure sexual functioning as an outcome. Health-care providers should not assume that level of sexual impairment determines sexual satisfaction and should explore cancer patients' sexual concerns directly.

Authors
Flynn, KE; Jeffery, DD; Keefe, FJ; Porter, LS; Shelby, RA; Fawzy, MR; Gosselin, TK; Reeve, BB; Weinfurt, KP
MLA Citation
Flynn, KE, Jeffery, DD, Keefe, FJ, Porter, LS, Shelby, RA, Fawzy, MR, Gosselin, TK, Reeve, BB, and Weinfurt, KP. "Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®)." Psycho-oncology 20.4 (April 2011): 378-386.
PMID
20878833
Source
epmc
Published In
Psycho-Oncology
Volume
20
Issue
4
Publish Date
2011
Start Page
378
End Page
386
DOI
10.1002/pon.1738

Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®).

OBJECTIVE: Cancer and treatments for cancer affect specific aspects of sexual functioning and intimacy; however, limited qualitative work has been done in diverse cancer populations. As part of an effort to improve measurement of self-reported sexual functioning, we explored the scope and importance of sexual functioning and intimacy to patients across cancer sites and along the continuum of care. METHODS: We conducted 16 diagnosis- and sex-specific focus groups with patients recruited from the Duke University tumor registry and oncology/hematology clinics (N=109). A trained note taker produced field notes summarizing the discussions. An independent auditor verified field notes against written transcripts. The content of the discussions was analyzed for major themes by two independent coders. RESULTS: Across all cancers, the most commonly discussed cancer- or treatment-related effects on sexual functioning and intimacy were fatigue, treatment-related hair loss, weight gain and organ loss or scarring. Additional barriers were unique to particular diagnoses, such as shortness of breath in lung cancer, gastrointestinal problems in colorectal cancers and incontinence in prostate cancer. Sexual functioning and intimacy were considered important to quality of life. While most effects of cancer were considered negative, many participants identified improvements to intimacy after cancer. CONCLUSION: Overall evaluations of satisfaction with sex life did not always correspond to specific aspects of functioning (e.g. erectile dysfunction), presenting a challenge to researchers aiming to measure sexual functioning as an outcome. Health-care providers should not assume that level of sexual impairment determines sexual satisfaction and should explore cancer patients' sexual concerns directly.

Authors
Flynn, KE; Jeffery, DD; Keefe, FJ; Porter, LS; Shelby, RA; Fawzy, MR; Gosselin, TK; Reeve, BB; Weinfurt, KP
MLA Citation
Flynn, KE, Jeffery, DD, Keefe, FJ, Porter, LS, Shelby, RA, Fawzy, MR, Gosselin, TK, Reeve, BB, and Weinfurt, KP. "Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®)." Psychooncology 20.4 (April 2011): 378-386.
PMID
20878833
Source
epmc
Published In
Psycho-Oncology
Volume
20
Issue
4
Publish Date
2011
Start Page
378
End Page
386
DOI
10.1002/pon.1738

Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®).

OBJECTIVE: Cancer and treatments for cancer affect specific aspects of sexual functioning and intimacy; however, limited qualitative work has been done in diverse cancer populations. As part of an effort to improve measurement of self-reported sexual functioning, we explored the scope and importance of sexual functioning and intimacy to patients across cancer sites and along the continuum of care. METHODS: We conducted 16 diagnosis- and sex-specific focus groups with patients recruited from the Duke University tumor registry and oncology/hematology clinics (N=109). A trained note taker produced field notes summarizing the discussions. An independent auditor verified field notes against written transcripts. The content of the discussions was analyzed for major themes by two independent coders. RESULTS: Across all cancers, the most commonly discussed cancer- or treatment-related effects on sexual functioning and intimacy were fatigue, treatment-related hair loss, weight gain and organ loss or scarring. Additional barriers were unique to particular diagnoses, such as shortness of breath in lung cancer, gastrointestinal problems in colorectal cancers and incontinence in prostate cancer. Sexual functioning and intimacy were considered important to quality of life. While most effects of cancer were considered negative, many participants identified improvements to intimacy after cancer. CONCLUSION: Overall evaluations of satisfaction with sex life did not always correspond to specific aspects of functioning (e.g. erectile dysfunction), presenting a challenge to researchers aiming to measure sexual functioning as an outcome. Health-care providers should not assume that level of sexual impairment determines sexual satisfaction and should explore cancer patients' sexual concerns directly.

Authors
Flynn, KE; Jeffery, DD; Keefe, FJ; Porter, LS; Shelby, RA; Fawzy, MR; Gosselin, TK; Reeve, BB; Weinfurt, KP
MLA Citation
Flynn, KE, Jeffery, DD, Keefe, FJ, Porter, LS, Shelby, RA, Fawzy, MR, Gosselin, TK, Reeve, BB, and Weinfurt, KP. "Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®)." Psychooncology 20.4 (April 2011): 378-386.
PMID
20878833
Source
epmc
Published In
Psycho-Oncology
Volume
20
Issue
4
Publish Date
2011
Start Page
378
End Page
386
DOI
10.1002/pon.1738

Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®).

OBJECTIVE: Cancer and treatments for cancer affect specific aspects of sexual functioning and intimacy; however, limited qualitative work has been done in diverse cancer populations. As part of an effort to improve measurement of self-reported sexual functioning, we explored the scope and importance of sexual functioning and intimacy to patients across cancer sites and along the continuum of care. METHODS: We conducted 16 diagnosis- and sex-specific focus groups with patients recruited from the Duke University tumor registry and oncology/hematology clinics (N=109). A trained note taker produced field notes summarizing the discussions. An independent auditor verified field notes against written transcripts. The content of the discussions was analyzed for major themes by two independent coders. RESULTS: Across all cancers, the most commonly discussed cancer- or treatment-related effects on sexual functioning and intimacy were fatigue, treatment-related hair loss, weight gain and organ loss or scarring. Additional barriers were unique to particular diagnoses, such as shortness of breath in lung cancer, gastrointestinal problems in colorectal cancers and incontinence in prostate cancer. Sexual functioning and intimacy were considered important to quality of life. While most effects of cancer were considered negative, many participants identified improvements to intimacy after cancer. CONCLUSION: Overall evaluations of satisfaction with sex life did not always correspond to specific aspects of functioning (e.g. erectile dysfunction), presenting a challenge to researchers aiming to measure sexual functioning as an outcome. Health-care providers should not assume that level of sexual impairment determines sexual satisfaction and should explore cancer patients' sexual concerns directly.

Authors
Flynn, KE; Jeffery, DD; Keefe, FJ; Porter, LS; Shelby, RA; Fawzy, MR; Gosselin, TK; Reeve, BB; Weinfurt, KP
MLA Citation
Flynn, KE, Jeffery, DD, Keefe, FJ, Porter, LS, Shelby, RA, Fawzy, MR, Gosselin, TK, Reeve, BB, and Weinfurt, KP. "Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®)." Psychooncology 20.4 (April 2011): 378-386.
PMID
20878833
Source
epmc
Published In
Psycho-Oncology
Volume
20
Issue
4
Publish Date
2011
Start Page
378
End Page
386
DOI
10.1002/pon.1738

Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®).

OBJECTIVE: Cancer and treatments for cancer affect specific aspects of sexual functioning and intimacy; however, limited qualitative work has been done in diverse cancer populations. As part of an effort to improve measurement of self-reported sexual functioning, we explored the scope and importance of sexual functioning and intimacy to patients across cancer sites and along the continuum of care. METHODS: We conducted 16 diagnosis- and sex-specific focus groups with patients recruited from the Duke University tumor registry and oncology/hematology clinics (N=109). A trained note taker produced field notes summarizing the discussions. An independent auditor verified field notes against written transcripts. The content of the discussions was analyzed for major themes by two independent coders. RESULTS: Across all cancers, the most commonly discussed cancer- or treatment-related effects on sexual functioning and intimacy were fatigue, treatment-related hair loss, weight gain and organ loss or scarring. Additional barriers were unique to particular diagnoses, such as shortness of breath in lung cancer, gastrointestinal problems in colorectal cancers and incontinence in prostate cancer. Sexual functioning and intimacy were considered important to quality of life. While most effects of cancer were considered negative, many participants identified improvements to intimacy after cancer. CONCLUSION: Overall evaluations of satisfaction with sex life did not always correspond to specific aspects of functioning (e.g. erectile dysfunction), presenting a challenge to researchers aiming to measure sexual functioning as an outcome. Health-care providers should not assume that level of sexual impairment determines sexual satisfaction and should explore cancer patients' sexual concerns directly.

Authors
Flynn, KE; Jeffery, DD; Keefe, FJ; Porter, LS; Shelby, RA; Fawzy, MR; Gosselin, TK; Reeve, BB; Weinfurt, KP
MLA Citation
Flynn, KE, Jeffery, DD, Keefe, FJ, Porter, LS, Shelby, RA, Fawzy, MR, Gosselin, TK, Reeve, BB, and Weinfurt, KP. "Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®)." Psychooncology 20.4 (April 2011): 378-386.
PMID
20878833
Source
epmc
Published In
Psycho-Oncology
Volume
20
Issue
4
Publish Date
2011
Start Page
378
End Page
386
DOI
10.1002/pon.1738

Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®).

OBJECTIVE: Cancer and treatments for cancer affect specific aspects of sexual functioning and intimacy; however, limited qualitative work has been done in diverse cancer populations. As part of an effort to improve measurement of self-reported sexual functioning, we explored the scope and importance of sexual functioning and intimacy to patients across cancer sites and along the continuum of care. METHODS: We conducted 16 diagnosis- and sex-specific focus groups with patients recruited from the Duke University tumor registry and oncology/hematology clinics (N=109). A trained note taker produced field notes summarizing the discussions. An independent auditor verified field notes against written transcripts. The content of the discussions was analyzed for major themes by two independent coders. RESULTS: Across all cancers, the most commonly discussed cancer- or treatment-related effects on sexual functioning and intimacy were fatigue, treatment-related hair loss, weight gain and organ loss or scarring. Additional barriers were unique to particular diagnoses, such as shortness of breath in lung cancer, gastrointestinal problems in colorectal cancers and incontinence in prostate cancer. Sexual functioning and intimacy were considered important to quality of life. While most effects of cancer were considered negative, many participants identified improvements to intimacy after cancer. CONCLUSION: Overall evaluations of satisfaction with sex life did not always correspond to specific aspects of functioning (e.g. erectile dysfunction), presenting a challenge to researchers aiming to measure sexual functioning as an outcome. Health-care providers should not assume that level of sexual impairment determines sexual satisfaction and should explore cancer patients' sexual concerns directly.

Authors
Flynn, KE; Jeffery, DD; Keefe, FJ; Porter, LS; Shelby, RA; Fawzy, MR; Gosselin, TK; Reeve, BB; Weinfurt, KP
MLA Citation
Flynn, KE, Jeffery, DD, Keefe, FJ, Porter, LS, Shelby, RA, Fawzy, MR, Gosselin, TK, Reeve, BB, and Weinfurt, KP. "Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®)." Psycho-oncology 20.4 (April 2011): 378-386.
PMID
20878833
Source
pubmed
Published In
Psycho-Oncology
Volume
20
Issue
4
Publish Date
2011
Start Page
378
End Page
386
DOI
10.1002/pon.1738

Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®).

OBJECTIVE: Cancer and treatments for cancer affect specific aspects of sexual functioning and intimacy; however, limited qualitative work has been done in diverse cancer populations. As part of an effort to improve measurement of self-reported sexual functioning, we explored the scope and importance of sexual functioning and intimacy to patients across cancer sites and along the continuum of care. METHODS: We conducted 16 diagnosis- and sex-specific focus groups with patients recruited from the Duke University tumor registry and oncology/hematology clinics (N=109). A trained note taker produced field notes summarizing the discussions. An independent auditor verified field notes against written transcripts. The content of the discussions was analyzed for major themes by two independent coders. RESULTS: Across all cancers, the most commonly discussed cancer- or treatment-related effects on sexual functioning and intimacy were fatigue, treatment-related hair loss, weight gain and organ loss or scarring. Additional barriers were unique to particular diagnoses, such as shortness of breath in lung cancer, gastrointestinal problems in colorectal cancers and incontinence in prostate cancer. Sexual functioning and intimacy were considered important to quality of life. While most effects of cancer were considered negative, many participants identified improvements to intimacy after cancer. CONCLUSION: Overall evaluations of satisfaction with sex life did not always correspond to specific aspects of functioning (e.g. erectile dysfunction), presenting a challenge to researchers aiming to measure sexual functioning as an outcome. Health-care providers should not assume that level of sexual impairment determines sexual satisfaction and should explore cancer patients' sexual concerns directly.

Authors
Flynn, KE; Jeffery, DD; Keefe, FJ; Porter, LS; Shelby, RA; Fawzy, MR; Gosselin, TK; Reeve, BB; Weinfurt, KP
MLA Citation
Flynn, KE, Jeffery, DD, Keefe, FJ, Porter, LS, Shelby, RA, Fawzy, MR, Gosselin, TK, Reeve, BB, and Weinfurt, KP. "Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®)." Psycho-oncology 20.4 (April 2011): 378-386.
PMID
20878833
Source
pubmed
Published In
Psycho-Oncology
Volume
20
Issue
4
Publish Date
2011
Start Page
378
End Page
386
DOI
10.1002/pon.1738

Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®).

OBJECTIVE: Cancer and treatments for cancer affect specific aspects of sexual functioning and intimacy; however, limited qualitative work has been done in diverse cancer populations. As part of an effort to improve measurement of self-reported sexual functioning, we explored the scope and importance of sexual functioning and intimacy to patients across cancer sites and along the continuum of care. METHODS: We conducted 16 diagnosis- and sex-specific focus groups with patients recruited from the Duke University tumor registry and oncology/hematology clinics (N=109). A trained note taker produced field notes summarizing the discussions. An independent auditor verified field notes against written transcripts. The content of the discussions was analyzed for major themes by two independent coders. RESULTS: Across all cancers, the most commonly discussed cancer- or treatment-related effects on sexual functioning and intimacy were fatigue, treatment-related hair loss, weight gain and organ loss or scarring. Additional barriers were unique to particular diagnoses, such as shortness of breath in lung cancer, gastrointestinal problems in colorectal cancers and incontinence in prostate cancer. Sexual functioning and intimacy were considered important to quality of life. While most effects of cancer were considered negative, many participants identified improvements to intimacy after cancer. CONCLUSION: Overall evaluations of satisfaction with sex life did not always correspond to specific aspects of functioning (e.g. erectile dysfunction), presenting a challenge to researchers aiming to measure sexual functioning as an outcome. Health-care providers should not assume that level of sexual impairment determines sexual satisfaction and should explore cancer patients' sexual concerns directly.

Authors
Flynn, KE; Jeffery, DD; Keefe, FJ; Porter, LS; Shelby, RA; Fawzy, MR; Gosselin, TK; Reeve, BB; Weinfurt, KP
MLA Citation
Flynn, KE, Jeffery, DD, Keefe, FJ, Porter, LS, Shelby, RA, Fawzy, MR, Gosselin, TK, Reeve, BB, and Weinfurt, KP. "Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®)." Psycho-oncology 20.4 (April 2011): 378-386.
PMID
20878833
Source
pubmed
Published In
Psycho-Oncology
Volume
20
Issue
4
Publish Date
2011
Start Page
378
End Page
386
DOI
10.1002/pon.1738

Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®).

OBJECTIVE: Cancer and treatments for cancer affect specific aspects of sexual functioning and intimacy; however, limited qualitative work has been done in diverse cancer populations. As part of an effort to improve measurement of self-reported sexual functioning, we explored the scope and importance of sexual functioning and intimacy to patients across cancer sites and along the continuum of care. METHODS: We conducted 16 diagnosis- and sex-specific focus groups with patients recruited from the Duke University tumor registry and oncology/hematology clinics (N=109). A trained note taker produced field notes summarizing the discussions. An independent auditor verified field notes against written transcripts. The content of the discussions was analyzed for major themes by two independent coders. RESULTS: Across all cancers, the most commonly discussed cancer- or treatment-related effects on sexual functioning and intimacy were fatigue, treatment-related hair loss, weight gain and organ loss or scarring. Additional barriers were unique to particular diagnoses, such as shortness of breath in lung cancer, gastrointestinal problems in colorectal cancers and incontinence in prostate cancer. Sexual functioning and intimacy were considered important to quality of life. While most effects of cancer were considered negative, many participants identified improvements to intimacy after cancer. CONCLUSION: Overall evaluations of satisfaction with sex life did not always correspond to specific aspects of functioning (e.g. erectile dysfunction), presenting a challenge to researchers aiming to measure sexual functioning as an outcome. Health-care providers should not assume that level of sexual impairment determines sexual satisfaction and should explore cancer patients' sexual concerns directly.

Authors
Flynn, KE; Jeffery, DD; Keefe, FJ; Porter, LS; Shelby, RA; Fawzy, MR; Gosselin, TK; Reeve, BB; Weinfurt, KP
MLA Citation
Flynn, KE, Jeffery, DD, Keefe, FJ, Porter, LS, Shelby, RA, Fawzy, MR, Gosselin, TK, Reeve, BB, and Weinfurt, KP. "Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®)." Psycho-oncology 20.4 (April 2011): 378-386.
PMID
20878833
Source
pubmed
Published In
Psycho-Oncology
Volume
20
Issue
4
Publish Date
2011
Start Page
378
End Page
386
DOI
10.1002/pon.1738

Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®).

OBJECTIVE: Cancer and treatments for cancer affect specific aspects of sexual functioning and intimacy; however, limited qualitative work has been done in diverse cancer populations. As part of an effort to improve measurement of self-reported sexual functioning, we explored the scope and importance of sexual functioning and intimacy to patients across cancer sites and along the continuum of care. METHODS: We conducted 16 diagnosis- and sex-specific focus groups with patients recruited from the Duke University tumor registry and oncology/hematology clinics (N=109). A trained note taker produced field notes summarizing the discussions. An independent auditor verified field notes against written transcripts. The content of the discussions was analyzed for major themes by two independent coders. RESULTS: Across all cancers, the most commonly discussed cancer- or treatment-related effects on sexual functioning and intimacy were fatigue, treatment-related hair loss, weight gain and organ loss or scarring. Additional barriers were unique to particular diagnoses, such as shortness of breath in lung cancer, gastrointestinal problems in colorectal cancers and incontinence in prostate cancer. Sexual functioning and intimacy were considered important to quality of life. While most effects of cancer were considered negative, many participants identified improvements to intimacy after cancer. CONCLUSION: Overall evaluations of satisfaction with sex life did not always correspond to specific aspects of functioning (e.g. erectile dysfunction), presenting a challenge to researchers aiming to measure sexual functioning as an outcome. Health-care providers should not assume that level of sexual impairment determines sexual satisfaction and should explore cancer patients' sexual concerns directly.

Authors
Flynn, KE; Jeffery, DD; Keefe, FJ; Porter, LS; Shelby, RA; Fawzy, MR; Gosselin, TK; Reeve, BB; Weinfurt, KP
MLA Citation
Flynn, KE, Jeffery, DD, Keefe, FJ, Porter, LS, Shelby, RA, Fawzy, MR, Gosselin, TK, Reeve, BB, and Weinfurt, KP. "Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®)." Psychooncology 20.4 (April 2011): 378-386.
PMID
20878833
Source
pubmed
Published In
Psycho-Oncology
Volume
20
Issue
4
Publish Date
2011
Start Page
378
End Page
386
DOI
10.1002/pon.1738

Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®).

OBJECTIVE: Cancer and treatments for cancer affect specific aspects of sexual functioning and intimacy; however, limited qualitative work has been done in diverse cancer populations. As part of an effort to improve measurement of self-reported sexual functioning, we explored the scope and importance of sexual functioning and intimacy to patients across cancer sites and along the continuum of care. METHODS: We conducted 16 diagnosis- and sex-specific focus groups with patients recruited from the Duke University tumor registry and oncology/hematology clinics (N=109). A trained note taker produced field notes summarizing the discussions. An independent auditor verified field notes against written transcripts. The content of the discussions was analyzed for major themes by two independent coders. RESULTS: Across all cancers, the most commonly discussed cancer- or treatment-related effects on sexual functioning and intimacy were fatigue, treatment-related hair loss, weight gain and organ loss or scarring. Additional barriers were unique to particular diagnoses, such as shortness of breath in lung cancer, gastrointestinal problems in colorectal cancers and incontinence in prostate cancer. Sexual functioning and intimacy were considered important to quality of life. While most effects of cancer were considered negative, many participants identified improvements to intimacy after cancer. CONCLUSION: Overall evaluations of satisfaction with sex life did not always correspond to specific aspects of functioning (e.g. erectile dysfunction), presenting a challenge to researchers aiming to measure sexual functioning as an outcome. Health-care providers should not assume that level of sexual impairment determines sexual satisfaction and should explore cancer patients' sexual concerns directly.

Authors
Flynn, KE; Jeffery, DD; Keefe, FJ; Porter, LS; Shelby, RA; Fawzy, MR; Gosselin, TK; Reeve, BB; Weinfurt, KP
MLA Citation
Flynn, KE, Jeffery, DD, Keefe, FJ, Porter, LS, Shelby, RA, Fawzy, MR, Gosselin, TK, Reeve, BB, and Weinfurt, KP. "Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®)." Psychooncology 20.4 (April 2011): 378-386.
PMID
20878833
Source
pubmed
Published In
Psycho-Oncology
Volume
20
Issue
4
Publish Date
2011
Start Page
378
End Page
386
DOI
10.1002/pon.1738

Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®).

OBJECTIVE: Cancer and treatments for cancer affect specific aspects of sexual functioning and intimacy; however, limited qualitative work has been done in diverse cancer populations. As part of an effort to improve measurement of self-reported sexual functioning, we explored the scope and importance of sexual functioning and intimacy to patients across cancer sites and along the continuum of care. METHODS: We conducted 16 diagnosis- and sex-specific focus groups with patients recruited from the Duke University tumor registry and oncology/hematology clinics (N=109). A trained note taker produced field notes summarizing the discussions. An independent auditor verified field notes against written transcripts. The content of the discussions was analyzed for major themes by two independent coders. RESULTS: Across all cancers, the most commonly discussed cancer- or treatment-related effects on sexual functioning and intimacy were fatigue, treatment-related hair loss, weight gain and organ loss or scarring. Additional barriers were unique to particular diagnoses, such as shortness of breath in lung cancer, gastrointestinal problems in colorectal cancers and incontinence in prostate cancer. Sexual functioning and intimacy were considered important to quality of life. While most effects of cancer were considered negative, many participants identified improvements to intimacy after cancer. CONCLUSION: Overall evaluations of satisfaction with sex life did not always correspond to specific aspects of functioning (e.g. erectile dysfunction), presenting a challenge to researchers aiming to measure sexual functioning as an outcome. Health-care providers should not assume that level of sexual impairment determines sexual satisfaction and should explore cancer patients' sexual concerns directly.

Authors
Flynn, KE; Jeffery, DD; Keefe, FJ; Porter, LS; Shelby, RA; Fawzy, MR; Gosselin, TK; Reeve, BB; Weinfurt, KP
MLA Citation
Flynn, KE, Jeffery, DD, Keefe, FJ, Porter, LS, Shelby, RA, Fawzy, MR, Gosselin, TK, Reeve, BB, and Weinfurt, KP. "Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®)." Psychooncology 20.4 (April 2011): 378-386.
PMID
20878833
Source
pubmed
Published In
Psycho-Oncology
Volume
20
Issue
4
Publish Date
2011
Start Page
378
End Page
386
DOI
10.1002/pon.1738

Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®).

OBJECTIVE: Cancer and treatments for cancer affect specific aspects of sexual functioning and intimacy; however, limited qualitative work has been done in diverse cancer populations. As part of an effort to improve measurement of self-reported sexual functioning, we explored the scope and importance of sexual functioning and intimacy to patients across cancer sites and along the continuum of care. METHODS: We conducted 16 diagnosis- and sex-specific focus groups with patients recruited from the Duke University tumor registry and oncology/hematology clinics (N=109). A trained note taker produced field notes summarizing the discussions. An independent auditor verified field notes against written transcripts. The content of the discussions was analyzed for major themes by two independent coders. RESULTS: Across all cancers, the most commonly discussed cancer- or treatment-related effects on sexual functioning and intimacy were fatigue, treatment-related hair loss, weight gain and organ loss or scarring. Additional barriers were unique to particular diagnoses, such as shortness of breath in lung cancer, gastrointestinal problems in colorectal cancers and incontinence in prostate cancer. Sexual functioning and intimacy were considered important to quality of life. While most effects of cancer were considered negative, many participants identified improvements to intimacy after cancer. CONCLUSION: Overall evaluations of satisfaction with sex life did not always correspond to specific aspects of functioning (e.g. erectile dysfunction), presenting a challenge to researchers aiming to measure sexual functioning as an outcome. Health-care providers should not assume that level of sexual impairment determines sexual satisfaction and should explore cancer patients' sexual concerns directly.

Authors
Flynn, KE; Jeffery, DD; Keefe, FJ; Porter, LS; Shelby, RA; Fawzy, MR; Gosselin, TK; Reeve, BB; Weinfurt, KP
MLA Citation
Flynn, KE, Jeffery, DD, Keefe, FJ, Porter, LS, Shelby, RA, Fawzy, MR, Gosselin, TK, Reeve, BB, and Weinfurt, KP. "Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®)." Psychooncology 20.4 (April 2011): 378-386.
PMID
20878833
Source
pubmed
Published In
Psycho-Oncology
Volume
20
Issue
4
Publish Date
2011
Start Page
378
End Page
386
DOI
10.1002/pon.1738

Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®).

OBJECTIVE: Cancer and treatments for cancer affect specific aspects of sexual functioning and intimacy; however, limited qualitative work has been done in diverse cancer populations. As part of an effort to improve measurement of self-reported sexual functioning, we explored the scope and importance of sexual functioning and intimacy to patients across cancer sites and along the continuum of care. METHODS: We conducted 16 diagnosis- and sex-specific focus groups with patients recruited from the Duke University tumor registry and oncology/hematology clinics (N=109). A trained note taker produced field notes summarizing the discussions. An independent auditor verified field notes against written transcripts. The content of the discussions was analyzed for major themes by two independent coders. RESULTS: Across all cancers, the most commonly discussed cancer- or treatment-related effects on sexual functioning and intimacy were fatigue, treatment-related hair loss, weight gain and organ loss or scarring. Additional barriers were unique to particular diagnoses, such as shortness of breath in lung cancer, gastrointestinal problems in colorectal cancers and incontinence in prostate cancer. Sexual functioning and intimacy were considered important to quality of life. While most effects of cancer were considered negative, many participants identified improvements to intimacy after cancer. CONCLUSION: Overall evaluations of satisfaction with sex life did not always correspond to specific aspects of functioning (e.g. erectile dysfunction), presenting a challenge to researchers aiming to measure sexual functioning as an outcome. Health-care providers should not assume that level of sexual impairment determines sexual satisfaction and should explore cancer patients' sexual concerns directly.

Authors
Flynn, KE; Jeffery, DD; Keefe, FJ; Porter, LS; Shelby, RA; Fawzy, MR; Gosselin, TK; Reeve, BB; Weinfurt, KP
MLA Citation
Flynn, KE, Jeffery, DD, Keefe, FJ, Porter, LS, Shelby, RA, Fawzy, MR, Gosselin, TK, Reeve, BB, and Weinfurt, KP. "Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®)." Psycho-oncology 20.4 (April 2011): 378-386.
PMID
20878833
Source
pubmed
Published In
Psycho-Oncology
Volume
20
Issue
4
Publish Date
2011
Start Page
378
End Page
386
DOI
10.1002/pon.1738

Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®).

OBJECTIVE: Cancer and treatments for cancer affect specific aspects of sexual functioning and intimacy; however, limited qualitative work has been done in diverse cancer populations. As part of an effort to improve measurement of self-reported sexual functioning, we explored the scope and importance of sexual functioning and intimacy to patients across cancer sites and along the continuum of care. METHODS: We conducted 16 diagnosis- and sex-specific focus groups with patients recruited from the Duke University tumor registry and oncology/hematology clinics (N=109). A trained note taker produced field notes summarizing the discussions. An independent auditor verified field notes against written transcripts. The content of the discussions was analyzed for major themes by two independent coders. RESULTS: Across all cancers, the most commonly discussed cancer- or treatment-related effects on sexual functioning and intimacy were fatigue, treatment-related hair loss, weight gain and organ loss or scarring. Additional barriers were unique to particular diagnoses, such as shortness of breath in lung cancer, gastrointestinal problems in colorectal cancers and incontinence in prostate cancer. Sexual functioning and intimacy were considered important to quality of life. While most effects of cancer were considered negative, many participants identified improvements to intimacy after cancer. CONCLUSION: Overall evaluations of satisfaction with sex life did not always correspond to specific aspects of functioning (e.g. erectile dysfunction), presenting a challenge to researchers aiming to measure sexual functioning as an outcome. Health-care providers should not assume that level of sexual impairment determines sexual satisfaction and should explore cancer patients' sexual concerns directly.

Authors
Flynn, KE; Jeffery, DD; Keefe, FJ; Porter, LS; Shelby, RA; Fawzy, MR; Gosselin, TK; Reeve, BB; Weinfurt, KP
MLA Citation
Flynn, KE, Jeffery, DD, Keefe, FJ, Porter, LS, Shelby, RA, Fawzy, MR, Gosselin, TK, Reeve, BB, and Weinfurt, KP. "Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®)." Psycho-oncology 20.4 (April 2011): 378-386.
PMID
20878833
Source
pubmed
Published In
Psycho-Oncology
Volume
20
Issue
4
Publish Date
2011
Start Page
378
End Page
386
DOI
10.1002/pon.1738

Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®).

OBJECTIVE: Cancer and treatments for cancer affect specific aspects of sexual functioning and intimacy; however, limited qualitative work has been done in diverse cancer populations. As part of an effort to improve measurement of self-reported sexual functioning, we explored the scope and importance of sexual functioning and intimacy to patients across cancer sites and along the continuum of care. METHODS: We conducted 16 diagnosis- and sex-specific focus groups with patients recruited from the Duke University tumor registry and oncology/hematology clinics (N=109). A trained note taker produced field notes summarizing the discussions. An independent auditor verified field notes against written transcripts. The content of the discussions was analyzed for major themes by two independent coders. RESULTS: Across all cancers, the most commonly discussed cancer- or treatment-related effects on sexual functioning and intimacy were fatigue, treatment-related hair loss, weight gain and organ loss or scarring. Additional barriers were unique to particular diagnoses, such as shortness of breath in lung cancer, gastrointestinal problems in colorectal cancers and incontinence in prostate cancer. Sexual functioning and intimacy were considered important to quality of life. While most effects of cancer were considered negative, many participants identified improvements to intimacy after cancer. CONCLUSION: Overall evaluations of satisfaction with sex life did not always correspond to specific aspects of functioning (e.g. erectile dysfunction), presenting a challenge to researchers aiming to measure sexual functioning as an outcome. Health-care providers should not assume that level of sexual impairment determines sexual satisfaction and should explore cancer patients' sexual concerns directly.

Authors
Flynn, KE; Jeffery, DD; Keefe, FJ; Porter, LS; Shelby, RA; Fawzy, MR; Gosselin, TK; Reeve, BB; Weinfurt, KP
MLA Citation
Flynn, KE, Jeffery, DD, Keefe, FJ, Porter, LS, Shelby, RA, Fawzy, MR, Gosselin, TK, Reeve, BB, and Weinfurt, KP. "Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®)." Psycho-oncology 20.4 (April 2011): 378-386.
PMID
20878833
Source
pubmed
Published In
Psycho-Oncology
Volume
20
Issue
4
Publish Date
2011
Start Page
378
End Page
386
DOI
10.1002/pon.1738

Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®).

OBJECTIVE: Cancer and treatments for cancer affect specific aspects of sexual functioning and intimacy; however, limited qualitative work has been done in diverse cancer populations. As part of an effort to improve measurement of self-reported sexual functioning, we explored the scope and importance of sexual functioning and intimacy to patients across cancer sites and along the continuum of care. METHODS: We conducted 16 diagnosis- and sex-specific focus groups with patients recruited from the Duke University tumor registry and oncology/hematology clinics (N=109). A trained note taker produced field notes summarizing the discussions. An independent auditor verified field notes against written transcripts. The content of the discussions was analyzed for major themes by two independent coders. RESULTS: Across all cancers, the most commonly discussed cancer- or treatment-related effects on sexual functioning and intimacy were fatigue, treatment-related hair loss, weight gain and organ loss or scarring. Additional barriers were unique to particular diagnoses, such as shortness of breath in lung cancer, gastrointestinal problems in colorectal cancers and incontinence in prostate cancer. Sexual functioning and intimacy were considered important to quality of life. While most effects of cancer were considered negative, many participants identified improvements to intimacy after cancer. CONCLUSION: Overall evaluations of satisfaction with sex life did not always correspond to specific aspects of functioning (e.g. erectile dysfunction), presenting a challenge to researchers aiming to measure sexual functioning as an outcome. Health-care providers should not assume that level of sexual impairment determines sexual satisfaction and should explore cancer patients' sexual concerns directly.

Authors
Flynn, KE; Jeffery, DD; Keefe, FJ; Porter, LS; Shelby, RA; Fawzy, MR; Gosselin, TK; Reeve, BB; Weinfurt, KP
MLA Citation
Flynn, KE, Jeffery, DD, Keefe, FJ, Porter, LS, Shelby, RA, Fawzy, MR, Gosselin, TK, Reeve, BB, and Weinfurt, KP. "Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®)." Psycho-oncology 20.4 (April 2011): 378-386.
PMID
20878833
Source
pubmed
Published In
Psycho-Oncology
Volume
20
Issue
4
Publish Date
2011
Start Page
378
End Page
386
DOI
10.1002/pon.1738

Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®).

OBJECTIVE: Cancer and treatments for cancer affect specific aspects of sexual functioning and intimacy; however, limited qualitative work has been done in diverse cancer populations. As part of an effort to improve measurement of self-reported sexual functioning, we explored the scope and importance of sexual functioning and intimacy to patients across cancer sites and along the continuum of care. METHODS: We conducted 16 diagnosis- and sex-specific focus groups with patients recruited from the Duke University tumor registry and oncology/hematology clinics (N=109). A trained note taker produced field notes summarizing the discussions. An independent auditor verified field notes against written transcripts. The content of the discussions was analyzed for major themes by two independent coders. RESULTS: Across all cancers, the most commonly discussed cancer- or treatment-related effects on sexual functioning and intimacy were fatigue, treatment-related hair loss, weight gain and organ loss or scarring. Additional barriers were unique to particular diagnoses, such as shortness of breath in lung cancer, gastrointestinal problems in colorectal cancers and incontinence in prostate cancer. Sexual functioning and intimacy were considered important to quality of life. While most effects of cancer were considered negative, many participants identified improvements to intimacy after cancer. CONCLUSION: Overall evaluations of satisfaction with sex life did not always correspond to specific aspects of functioning (e.g. erectile dysfunction), presenting a challenge to researchers aiming to measure sexual functioning as an outcome. Health-care providers should not assume that level of sexual impairment determines sexual satisfaction and should explore cancer patients' sexual concerns directly.

Authors
Flynn, KE; Jeffery, DD; Keefe, FJ; Porter, LS; Shelby, RA; Fawzy, MR; Gosselin, TK; Reeve, BB; Weinfurt, KP
MLA Citation
Flynn, KE, Jeffery, DD, Keefe, FJ, Porter, LS, Shelby, RA, Fawzy, MR, Gosselin, TK, Reeve, BB, and Weinfurt, KP. "Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®)." Psychooncology 20.4 (April 2011): 378-386.
PMID
20878833
Source
pubmed
Published In
Psycho-Oncology
Volume
20
Issue
4
Publish Date
2011
Start Page
378
End Page
386
DOI
10.1002/pon.1738

Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®).

OBJECTIVE: Cancer and treatments for cancer affect specific aspects of sexual functioning and intimacy; however, limited qualitative work has been done in diverse cancer populations. As part of an effort to improve measurement of self-reported sexual functioning, we explored the scope and importance of sexual functioning and intimacy to patients across cancer sites and along the continuum of care. METHODS: We conducted 16 diagnosis- and sex-specific focus groups with patients recruited from the Duke University tumor registry and oncology/hematology clinics (N=109). A trained note taker produced field notes summarizing the discussions. An independent auditor verified field notes against written transcripts. The content of the discussions was analyzed for major themes by two independent coders. RESULTS: Across all cancers, the most commonly discussed cancer- or treatment-related effects on sexual functioning and intimacy were fatigue, treatment-related hair loss, weight gain and organ loss or scarring. Additional barriers were unique to particular diagnoses, such as shortness of breath in lung cancer, gastrointestinal problems in colorectal cancers and incontinence in prostate cancer. Sexual functioning and intimacy were considered important to quality of life. While most effects of cancer were considered negative, many participants identified improvements to intimacy after cancer. CONCLUSION: Overall evaluations of satisfaction with sex life did not always correspond to specific aspects of functioning (e.g. erectile dysfunction), presenting a challenge to researchers aiming to measure sexual functioning as an outcome. Health-care providers should not assume that level of sexual impairment determines sexual satisfaction and should explore cancer patients' sexual concerns directly.

Authors
Flynn, KE; Jeffery, DD; Keefe, FJ; Porter, LS; Shelby, RA; Fawzy, MR; Gosselin, TK; Reeve, BB; Weinfurt, KP
MLA Citation
Flynn, KE, Jeffery, DD, Keefe, FJ, Porter, LS, Shelby, RA, Fawzy, MR, Gosselin, TK, Reeve, BB, and Weinfurt, KP. "Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®)." Psychooncology 20.4 (April 2011): 378-386.
PMID
20878833
Source
pubmed
Published In
Psycho-Oncology
Volume
20
Issue
4
Publish Date
2011
Start Page
378
End Page
386
DOI
10.1002/pon.1738

Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®).

OBJECTIVE: Cancer and treatments for cancer affect specific aspects of sexual functioning and intimacy; however, limited qualitative work has been done in diverse cancer populations. As part of an effort to improve measurement of self-reported sexual functioning, we explored the scope and importance of sexual functioning and intimacy to patients across cancer sites and along the continuum of care. METHODS: We conducted 16 diagnosis- and sex-specific focus groups with patients recruited from the Duke University tumor registry and oncology/hematology clinics (N=109). A trained note taker produced field notes summarizing the discussions. An independent auditor verified field notes against written transcripts. The content of the discussions was analyzed for major themes by two independent coders. RESULTS: Across all cancers, the most commonly discussed cancer- or treatment-related effects on sexual functioning and intimacy were fatigue, treatment-related hair loss, weight gain and organ loss or scarring. Additional barriers were unique to particular diagnoses, such as shortness of breath in lung cancer, gastrointestinal problems in colorectal cancers and incontinence in prostate cancer. Sexual functioning and intimacy were considered important to quality of life. While most effects of cancer were considered negative, many participants identified improvements to intimacy after cancer. CONCLUSION: Overall evaluations of satisfaction with sex life did not always correspond to specific aspects of functioning (e.g. erectile dysfunction), presenting a challenge to researchers aiming to measure sexual functioning as an outcome. Health-care providers should not assume that level of sexual impairment determines sexual satisfaction and should explore cancer patients' sexual concerns directly.

Authors
Flynn, KE; Jeffery, DD; Keefe, FJ; Porter, LS; Shelby, RA; Fawzy, MR; Gosselin, TK; Reeve, BB; Weinfurt, KP
MLA Citation
Flynn, KE, Jeffery, DD, Keefe, FJ, Porter, LS, Shelby, RA, Fawzy, MR, Gosselin, TK, Reeve, BB, and Weinfurt, KP. "Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®)." Psychooncology 20.4 (April 2011): 378-386.
PMID
20878833
Source
pubmed
Published In
Psycho-Oncology
Volume
20
Issue
4
Publish Date
2011
Start Page
378
End Page
386
DOI
10.1002/pon.1738

Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®).

OBJECTIVE: Cancer and treatments for cancer affect specific aspects of sexual functioning and intimacy; however, limited qualitative work has been done in diverse cancer populations. As part of an effort to improve measurement of self-reported sexual functioning, we explored the scope and importance of sexual functioning and intimacy to patients across cancer sites and along the continuum of care. METHODS: We conducted 16 diagnosis- and sex-specific focus groups with patients recruited from the Duke University tumor registry and oncology/hematology clinics (N=109). A trained note taker produced field notes summarizing the discussions. An independent auditor verified field notes against written transcripts. The content of the discussions was analyzed for major themes by two independent coders. RESULTS: Across all cancers, the most commonly discussed cancer- or treatment-related effects on sexual functioning and intimacy were fatigue, treatment-related hair loss, weight gain and organ loss or scarring. Additional barriers were unique to particular diagnoses, such as shortness of breath in lung cancer, gastrointestinal problems in colorectal cancers and incontinence in prostate cancer. Sexual functioning and intimacy were considered important to quality of life. While most effects of cancer were considered negative, many participants identified improvements to intimacy after cancer. CONCLUSION: Overall evaluations of satisfaction with sex life did not always correspond to specific aspects of functioning (e.g. erectile dysfunction), presenting a challenge to researchers aiming to measure sexual functioning as an outcome. Health-care providers should not assume that level of sexual impairment determines sexual satisfaction and should explore cancer patients' sexual concerns directly.

Authors
Flynn, KE; Jeffery, DD; Keefe, FJ; Porter, LS; Shelby, RA; Fawzy, MR; Gosselin, TK; Reeve, BB; Weinfurt, KP
MLA Citation
Flynn, KE, Jeffery, DD, Keefe, FJ, Porter, LS, Shelby, RA, Fawzy, MR, Gosselin, TK, Reeve, BB, and Weinfurt, KP. "Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®)." Psychooncology 20.4 (April 2011): 378-386.
PMID
20878833
Source
pubmed
Published In
Psycho-Oncology
Volume
20
Issue
4
Publish Date
2011
Start Page
378
End Page
386
DOI
10.1002/pon.1738

Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®).

Cancer and treatments for cancer affect specific aspects of sexual functioning and intimacy; however, limited qualitative work has been done in diverse cancer populations. As part of an effort to improve measurement of self-reported sexual functioning, we explored the scope and importance of sexual functioning and intimacy to patients across cancer sites and along the continuum of care.We conducted 16 diagnosis- and sex-specific focus groups with patients recruited from the Duke University tumor registry and oncology/hematology clinics (N=109). A trained note taker produced field notes summarizing the discussions. An independent auditor verified field notes against written transcripts. The content of the discussions was analyzed for major themes by two independent coders.Across all cancers, the most commonly discussed cancer- or treatment-related effects on sexual functioning and intimacy were fatigue, treatment-related hair loss, weight gain and organ loss or scarring. Additional barriers were unique to particular diagnoses, such as shortness of breath in lung cancer, gastrointestinal problems in colorectal cancers and incontinence in prostate cancer. Sexual functioning and intimacy were considered important to quality of life. While most effects of cancer were considered negative, many participants identified improvements to intimacy after cancer.Overall evaluations of satisfaction with sex life did not always correspond to specific aspects of functioning (e.g. erectile dysfunction), presenting a challenge to researchers aiming to measure sexual functioning as an outcome. Health-care providers should not assume that level of sexual impairment determines sexual satisfaction and should explore cancer patients' sexual concerns directly.

Authors
Flynn, KE; Jeffery, DD; Keefe, FJ; Porter, LS; Shelby, RA; Fawzy, MR; Gosselin, TK; Reeve, BB; Weinfurt, KP
MLA Citation
Flynn, KE, Jeffery, DD, Keefe, FJ, Porter, LS, Shelby, RA, Fawzy, MR, Gosselin, TK, Reeve, BB, and Weinfurt, KP. "Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®)." Psycho-oncology 20.4 (April 2011): 378-386.
PMID
20878833
Source
epmc
Published In
Psycho-Oncology
Volume
20
Issue
4
Publish Date
2011
Start Page
378
End Page
386
DOI
10.1002/pon.1738

Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®).

Cancer and treatments for cancer affect specific aspects of sexual functioning and intimacy; however, limited qualitative work has been done in diverse cancer populations. As part of an effort to improve measurement of self-reported sexual functioning, we explored the scope and importance of sexual functioning and intimacy to patients across cancer sites and along the continuum of care.We conducted 16 diagnosis- and sex-specific focus groups with patients recruited from the Duke University tumor registry and oncology/hematology clinics (N=109). A trained note taker produced field notes summarizing the discussions. An independent auditor verified field notes against written transcripts. The content of the discussions was analyzed for major themes by two independent coders.Across all cancers, the most commonly discussed cancer- or treatment-related effects on sexual functioning and intimacy were fatigue, treatment-related hair loss, weight gain and organ loss or scarring. Additional barriers were unique to particular diagnoses, such as shortness of breath in lung cancer, gastrointestinal problems in colorectal cancers and incontinence in prostate cancer. Sexual functioning and intimacy were considered important to quality of life. While most effects of cancer were considered negative, many participants identified improvements to intimacy after cancer.Overall evaluations of satisfaction with sex life did not always correspond to specific aspects of functioning (e.g. erectile dysfunction), presenting a challenge to researchers aiming to measure sexual functioning as an outcome. Health-care providers should not assume that level of sexual impairment determines sexual satisfaction and should explore cancer patients' sexual concerns directly.

Authors
Flynn, KE; Jeffery, DD; Keefe, FJ; Porter, LS; Shelby, RA; Fawzy, MR; Gosselin, TK; Reeve, BB; Weinfurt, KP
MLA Citation
Flynn, KE, Jeffery, DD, Keefe, FJ, Porter, LS, Shelby, RA, Fawzy, MR, Gosselin, TK, Reeve, BB, and Weinfurt, KP. "Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®)." Psycho-oncology 20.4 (April 2011): 378-386.
PMID
20878833
Source
epmc
Published In
Psycho-Oncology
Volume
20
Issue
4
Publish Date
2011
Start Page
378
End Page
386
DOI
10.1002/pon.1738

Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®).

Cancer and treatments for cancer affect specific aspects of sexual functioning and intimacy; however, limited qualitative work has been done in diverse cancer populations. As part of an effort to improve measurement of self-reported sexual functioning, we explored the scope and importance of sexual functioning and intimacy to patients across cancer sites and along the continuum of care.We conducted 16 diagnosis- and sex-specific focus groups with patients recruited from the Duke University tumor registry and oncology/hematology clinics (N=109). A trained note taker produced field notes summarizing the discussions. An independent auditor verified field notes against written transcripts. The content of the discussions was analyzed for major themes by two independent coders.Across all cancers, the most commonly discussed cancer- or treatment-related effects on sexual functioning and intimacy were fatigue, treatment-related hair loss, weight gain and organ loss or scarring. Additional barriers were unique to particular diagnoses, such as shortness of breath in lung cancer, gastrointestinal problems in colorectal cancers and incontinence in prostate cancer. Sexual functioning and intimacy were considered important to quality of life. While most effects of cancer were considered negative, many participants identified improvements to intimacy after cancer.Overall evaluations of satisfaction with sex life did not always correspond to specific aspects of functioning (e.g. erectile dysfunction), presenting a challenge to researchers aiming to measure sexual functioning as an outcome. Health-care providers should not assume that level of sexual impairment determines sexual satisfaction and should explore cancer patients' sexual concerns directly.

Authors
Flynn, KE; Jeffery, DD; Keefe, FJ; Porter, LS; Shelby, RA; Fawzy, MR; Gosselin, TK; Reeve, BB; Weinfurt, KP
MLA Citation
Flynn, KE, Jeffery, DD, Keefe, FJ, Porter, LS, Shelby, RA, Fawzy, MR, Gosselin, TK, Reeve, BB, and Weinfurt, KP. "Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®)." Psycho-oncology 20.4 (April 2011): 378-386.
PMID
20878833
Source
epmc
Published In
Psycho-Oncology
Volume
20
Issue
4
Publish Date
2011
Start Page
378
End Page
386
DOI
10.1002/pon.1738

Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®).

Cancer and treatments for cancer affect specific aspects of sexual functioning and intimacy; however, limited qualitative work has been done in diverse cancer populations. As part of an effort to improve measurement of self-reported sexual functioning, we explored the scope and importance of sexual functioning and intimacy to patients across cancer sites and along the continuum of care.We conducted 16 diagnosis- and sex-specific focus groups with patients recruited from the Duke University tumor registry and oncology/hematology clinics (N=109). A trained note taker produced field notes summarizing the discussions. An independent auditor verified field notes against written transcripts. The content of the discussions was analyzed for major themes by two independent coders.Across all cancers, the most commonly discussed cancer- or treatment-related effects on sexual functioning and intimacy were fatigue, treatment-related hair loss, weight gain and organ loss or scarring. Additional barriers were unique to particular diagnoses, such as shortness of breath in lung cancer, gastrointestinal problems in colorectal cancers and incontinence in prostate cancer. Sexual functioning and intimacy were considered important to quality of life. While most effects of cancer were considered negative, many participants identified improvements to intimacy after cancer.Overall evaluations of satisfaction with sex life did not always correspond to specific aspects of functioning (e.g. erectile dysfunction), presenting a challenge to researchers aiming to measure sexual functioning as an outcome. Health-care providers should not assume that level of sexual impairment determines sexual satisfaction and should explore cancer patients' sexual concerns directly.

Authors
Flynn, KE; Jeffery, DD; Keefe, FJ; Porter, LS; Shelby, RA; Fawzy, MR; Gosselin, TK; Reeve, BB; Weinfurt, KP
MLA Citation
Flynn, KE, Jeffery, DD, Keefe, FJ, Porter, LS, Shelby, RA, Fawzy, MR, Gosselin, TK, Reeve, BB, and Weinfurt, KP. "Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®)." Psycho-oncology 20.4 (April 2011): 378-386.
PMID
20878833
Source
epmc
Published In
Psycho-Oncology
Volume
20
Issue
4
Publish Date
2011
Start Page
378
End Page
386
DOI
10.1002/pon.1738

Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®).

Cancer and treatments for cancer affect specific aspects of sexual functioning and intimacy; however, limited qualitative work has been done in diverse cancer populations. As part of an effort to improve measurement of self-reported sexual functioning, we explored the scope and importance of sexual functioning and intimacy to patients across cancer sites and along the continuum of care.We conducted 16 diagnosis- and sex-specific focus groups with patients recruited from the Duke University tumor registry and oncology/hematology clinics (N=109). A trained note taker produced field notes summarizing the discussions. An independent auditor verified field notes against written transcripts. The content of the discussions was analyzed for major themes by two independent coders.Across all cancers, the most commonly discussed cancer- or treatment-related effects on sexual functioning and intimacy were fatigue, treatment-related hair loss, weight gain and organ loss or scarring. Additional barriers were unique to particular diagnoses, such as shortness of breath in lung cancer, gastrointestinal problems in colorectal cancers and incontinence in prostate cancer. Sexual functioning and intimacy were considered important to quality of life. While most effects of cancer were considered negative, many participants identified improvements to intimacy after cancer.Overall evaluations of satisfaction with sex life did not always correspond to specific aspects of functioning (e.g. erectile dysfunction), presenting a challenge to researchers aiming to measure sexual functioning as an outcome. Health-care providers should not assume that level of sexual impairment determines sexual satisfaction and should explore cancer patients' sexual concerns directly.

Authors
Flynn, KE; Jeffery, DD; Keefe, FJ; Porter, LS; Shelby, RA; Fawzy, MR; Gosselin, TK; Reeve, BB; Weinfurt, KP
MLA Citation
Flynn, KE, Jeffery, DD, Keefe, FJ, Porter, LS, Shelby, RA, Fawzy, MR, Gosselin, TK, Reeve, BB, and Weinfurt, KP. "Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®)." Psychooncology 20.4 (April 2011): 378-386.
PMID
20878833
Source
epmc
Published In
Psycho-Oncology
Volume
20
Issue
4
Publish Date
2011
Start Page
378
End Page
386
DOI
10.1002/pon.1738

Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®).

Cancer and treatments for cancer affect specific aspects of sexual functioning and intimacy; however, limited qualitative work has been done in diverse cancer populations. As part of an effort to improve measurement of self-reported sexual functioning, we explored the scope and importance of sexual functioning and intimacy to patients across cancer sites and along the continuum of care.We conducted 16 diagnosis- and sex-specific focus groups with patients recruited from the Duke University tumor registry and oncology/hematology clinics (N=109). A trained note taker produced field notes summarizing the discussions. An independent auditor verified field notes against written transcripts. The content of the discussions was analyzed for major themes by two independent coders.Across all cancers, the most commonly discussed cancer- or treatment-related effects on sexual functioning and intimacy were fatigue, treatment-related hair loss, weight gain and organ loss or scarring. Additional barriers were unique to particular diagnoses, such as shortness of breath in lung cancer, gastrointestinal problems in colorectal cancers and incontinence in prostate cancer. Sexual functioning and intimacy were considered important to quality of life. While most effects of cancer were considered negative, many participants identified improvements to intimacy after cancer.Overall evaluations of satisfaction with sex life did not always correspond to specific aspects of functioning (e.g. erectile dysfunction), presenting a challenge to researchers aiming to measure sexual functioning as an outcome. Health-care providers should not assume that level of sexual impairment determines sexual satisfaction and should explore cancer patients' sexual concerns directly.

Authors
Flynn, KE; Jeffery, DD; Keefe, FJ; Porter, LS; Shelby, RA; Fawzy, MR; Gosselin, TK; Reeve, BB; Weinfurt, KP
MLA Citation
Flynn, KE, Jeffery, DD, Keefe, FJ, Porter, LS, Shelby, RA, Fawzy, MR, Gosselin, TK, Reeve, BB, and Weinfurt, KP. "Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®)." Psychooncology 20.4 (April 2011): 378-386.
PMID
20878833
Source
epmc
Published In
Psycho-Oncology
Volume
20
Issue
4
Publish Date
2011
Start Page
378
End Page
386
DOI
10.1002/pon.1738

Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®).

Cancer and treatments for cancer affect specific aspects of sexual functioning and intimacy; however, limited qualitative work has been done in diverse cancer populations. As part of an effort to improve measurement of self-reported sexual functioning, we explored the scope and importance of sexual functioning and intimacy to patients across cancer sites and along the continuum of care.We conducted 16 diagnosis- and sex-specific focus groups with patients recruited from the Duke University tumor registry and oncology/hematology clinics (N=109). A trained note taker produced field notes summarizing the discussions. An independent auditor verified field notes against written transcripts. The content of the discussions was analyzed for major themes by two independent coders.Across all cancers, the most commonly discussed cancer- or treatment-related effects on sexual functioning and intimacy were fatigue, treatment-related hair loss, weight gain and organ loss or scarring. Additional barriers were unique to particular diagnoses, such as shortness of breath in lung cancer, gastrointestinal problems in colorectal cancers and incontinence in prostate cancer. Sexual functioning and intimacy were considered important to quality of life. While most effects of cancer were considered negative, many participants identified improvements to intimacy after cancer.Overall evaluations of satisfaction with sex life did not always correspond to specific aspects of functioning (e.g. erectile dysfunction), presenting a challenge to researchers aiming to measure sexual functioning as an outcome. Health-care providers should not assume that level of sexual impairment determines sexual satisfaction and should explore cancer patients' sexual concerns directly.

Authors
Flynn, KE; Jeffery, DD; Keefe, FJ; Porter, LS; Shelby, RA; Fawzy, MR; Gosselin, TK; Reeve, BB; Weinfurt, KP
MLA Citation
Flynn, KE, Jeffery, DD, Keefe, FJ, Porter, LS, Shelby, RA, Fawzy, MR, Gosselin, TK, Reeve, BB, and Weinfurt, KP. "Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®)." Psychooncology 20.4 (April 2011): 378-386.
PMID
20878833
Source
epmc
Published In
Psycho-Oncology
Volume
20
Issue
4
Publish Date
2011
Start Page
378
End Page
386
DOI
10.1002/pon.1738

Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®).

Cancer and treatments for cancer affect specific aspects of sexual functioning and intimacy; however, limited qualitative work has been done in diverse cancer populations. As part of an effort to improve measurement of self-reported sexual functioning, we explored the scope and importance of sexual functioning and intimacy to patients across cancer sites and along the continuum of care.We conducted 16 diagnosis- and sex-specific focus groups with patients recruited from the Duke University tumor registry and oncology/hematology clinics (N=109). A trained note taker produced field notes summarizing the discussions. An independent auditor verified field notes against written transcripts. The content of the discussions was analyzed for major themes by two independent coders.Across all cancers, the most commonly discussed cancer- or treatment-related effects on sexual functioning and intimacy were fatigue, treatment-related hair loss, weight gain and organ loss or scarring. Additional barriers were unique to particular diagnoses, such as shortness of breath in lung cancer, gastrointestinal problems in colorectal cancers and incontinence in prostate cancer. Sexual functioning and intimacy were considered important to quality of life. While most effects of cancer were considered negative, many participants identified improvements to intimacy after cancer.Overall evaluations of satisfaction with sex life did not always correspond to specific aspects of functioning (e.g. erectile dysfunction), presenting a challenge to researchers aiming to measure sexual functioning as an outcome. Health-care providers should not assume that level of sexual impairment determines sexual satisfaction and should explore cancer patients' sexual concerns directly.

Authors
Flynn, KE; Jeffery, DD; Keefe, FJ; Porter, LS; Shelby, RA; Fawzy, MR; Gosselin, TK; Reeve, BB; Weinfurt, KP
MLA Citation
Flynn, KE, Jeffery, DD, Keefe, FJ, Porter, LS, Shelby, RA, Fawzy, MR, Gosselin, TK, Reeve, BB, and Weinfurt, KP. "Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®)." Psychooncology 20.4 (April 2011): 378-386.
PMID
20878833
Source
epmc
Published In
Psycho-Oncology
Volume
20
Issue
4
Publish Date
2011
Start Page
378
End Page
386
DOI
10.1002/pon.1738

Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®).

Cancer and treatments for cancer affect specific aspects of sexual functioning and intimacy; however, limited qualitative work has been done in diverse cancer populations. As part of an effort to improve measurement of self-reported sexual functioning, we explored the scope and importance of sexual functioning and intimacy to patients across cancer sites and along the continuum of care.We conducted 16 diagnosis- and sex-specific focus groups with patients recruited from the Duke University tumor registry and oncology/hematology clinics (N=109). A trained note taker produced field notes summarizing the discussions. An independent auditor verified field notes against written transcripts. The content of the discussions was analyzed for major themes by two independent coders.Across all cancers, the most commonly discussed cancer- or treatment-related effects on sexual functioning and intimacy were fatigue, treatment-related hair loss, weight gain and organ loss or scarring. Additional barriers were unique to particular diagnoses, such as shortness of breath in lung cancer, gastrointestinal problems in colorectal cancers and incontinence in prostate cancer. Sexual functioning and intimacy were considered important to quality of life. While most effects of cancer were considered negative, many participants identified improvements to intimacy after cancer.Overall evaluations of satisfaction with sex life did not always correspond to specific aspects of functioning (e.g. erectile dysfunction), presenting a challenge to researchers aiming to measure sexual functioning as an outcome. Health-care providers should not assume that level of sexual impairment determines sexual satisfaction and should explore cancer patients' sexual concerns directly.

Authors
Flynn, KE; Jeffery, DD; Keefe, FJ; Porter, LS; Shelby, RA; Fawzy, MR; Gosselin, TK; Reeve, BB; Weinfurt, KP
MLA Citation
Flynn, KE, Jeffery, DD, Keefe, FJ, Porter, LS, Shelby, RA, Fawzy, MR, Gosselin, TK, Reeve, BB, and Weinfurt, KP. "Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®)." Psycho-oncology 20.4 (April 2011): 378-386.
PMID
20878833
Source
epmc
Published In
Psycho-Oncology
Volume
20
Issue
4
Publish Date
2011
Start Page
378
End Page
386
DOI
10.1002/pon.1738

Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®).

Cancer and treatments for cancer affect specific aspects of sexual functioning and intimacy; however, limited qualitative work has been done in diverse cancer populations. As part of an effort to improve measurement of self-reported sexual functioning, we explored the scope and importance of sexual functioning and intimacy to patients across cancer sites and along the continuum of care.We conducted 16 diagnosis- and sex-specific focus groups with patients recruited from the Duke University tumor registry and oncology/hematology clinics (N=109). A trained note taker produced field notes summarizing the discussions. An independent auditor verified field notes against written transcripts. The content of the discussions was analyzed for major themes by two independent coders.Across all cancers, the most commonly discussed cancer- or treatment-related effects on sexual functioning and intimacy were fatigue, treatment-related hair loss, weight gain and organ loss or scarring. Additional barriers were unique to particular diagnoses, such as shortness of breath in lung cancer, gastrointestinal problems in colorectal cancers and incontinence in prostate cancer. Sexual functioning and intimacy were considered important to quality of life. While most effects of cancer were considered negative, many participants identified improvements to intimacy after cancer.Overall evaluations of satisfaction with sex life did not always correspond to specific aspects of functioning (e.g. erectile dysfunction), presenting a challenge to researchers aiming to measure sexual functioning as an outcome. Health-care providers should not assume that level of sexual impairment determines sexual satisfaction and should explore cancer patients' sexual concerns directly.

Authors
Flynn, KE; Jeffery, DD; Keefe, FJ; Porter, LS; Shelby, RA; Fawzy, MR; Gosselin, TK; Reeve, BB; Weinfurt, KP
MLA Citation
Flynn, KE, Jeffery, DD, Keefe, FJ, Porter, LS, Shelby, RA, Fawzy, MR, Gosselin, TK, Reeve, BB, and Weinfurt, KP. "Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®)." Psycho-oncology 20.4 (April 2011): 378-386.
PMID
20878833
Source
epmc
Published In
Psycho-Oncology
Volume
20
Issue
4
Publish Date
2011
Start Page
378
End Page
386
DOI
10.1002/pon.1738

Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®).

Cancer and treatments for cancer affect specific aspects of sexual functioning and intimacy; however, limited qualitative work has been done in diverse cancer populations. As part of an effort to improve measurement of self-reported sexual functioning, we explored the scope and importance of sexual functioning and intimacy to patients across cancer sites and along the continuum of care.We conducted 16 diagnosis- and sex-specific focus groups with patients recruited from the Duke University tumor registry and oncology/hematology clinics (N=109). A trained note taker produced field notes summarizing the discussions. An independent auditor verified field notes against written transcripts. The content of the discussions was analyzed for major themes by two independent coders.Across all cancers, the most commonly discussed cancer- or treatment-related effects on sexual functioning and intimacy were fatigue, treatment-related hair loss, weight gain and organ loss or scarring. Additional barriers were unique to particular diagnoses, such as shortness of breath in lung cancer, gastrointestinal problems in colorectal cancers and incontinence in prostate cancer. Sexual functioning and intimacy were considered important to quality of life. While most effects of cancer were considered negative, many participants identified improvements to intimacy after cancer.Overall evaluations of satisfaction with sex life did not always correspond to specific aspects of functioning (e.g. erectile dysfunction), presenting a challenge to researchers aiming to measure sexual functioning as an outcome. Health-care providers should not assume that level of sexual impairment determines sexual satisfaction and should explore cancer patients' sexual concerns directly.

Authors
Flynn, KE; Jeffery, DD; Keefe, FJ; Porter, LS; Shelby, RA; Fawzy, MR; Gosselin, TK; Reeve, BB; Weinfurt, KP
MLA Citation
Flynn, KE, Jeffery, DD, Keefe, FJ, Porter, LS, Shelby, RA, Fawzy, MR, Gosselin, TK, Reeve, BB, and Weinfurt, KP. "Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®)." Psycho-oncology 20.4 (April 2011): 378-386.
PMID
20878833
Source
epmc
Published In
Psycho-Oncology
Volume
20
Issue
4
Publish Date
2011
Start Page
378
End Page
386
DOI
10.1002/pon.1738

Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®).

Cancer and treatments for cancer affect specific aspects of sexual functioning and intimacy; however, limited qualitative work has been done in diverse cancer populations. As part of an effort to improve measurement of self-reported sexual functioning, we explored the scope and importance of sexual functioning and intimacy to patients across cancer sites and along the continuum of care.We conducted 16 diagnosis- and sex-specific focus groups with patients recruited from the Duke University tumor registry and oncology/hematology clinics (N=109). A trained note taker produced field notes summarizing the discussions. An independent auditor verified field notes against written transcripts. The content of the discussions was analyzed for major themes by two independent coders.Across all cancers, the most commonly discussed cancer- or treatment-related effects on sexual functioning and intimacy were fatigue, treatment-related hair loss, weight gain and organ loss or scarring. Additional barriers were unique to particular diagnoses, such as shortness of breath in lung cancer, gastrointestinal problems in colorectal cancers and incontinence in prostate cancer. Sexual functioning and intimacy were considered important to quality of life. While most effects of cancer were considered negative, many participants identified improvements to intimacy after cancer.Overall evaluations of satisfaction with sex life did not always correspond to specific aspects of functioning (e.g. erectile dysfunction), presenting a challenge to researchers aiming to measure sexual functioning as an outcome. Health-care providers should not assume that level of sexual impairment determines sexual satisfaction and should explore cancer patients' sexual concerns directly.

Authors
Flynn, KE; Jeffery, DD; Keefe, FJ; Porter, LS; Shelby, RA; Fawzy, MR; Gosselin, TK; Reeve, BB; Weinfurt, KP
MLA Citation
Flynn, KE, Jeffery, DD, Keefe, FJ, Porter, LS, Shelby, RA, Fawzy, MR, Gosselin, TK, Reeve, BB, and Weinfurt, KP. "Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®)." Psycho-oncology 20.4 (April 2011): 378-386.
PMID
20878833
Source
epmc
Published In
Psycho-Oncology
Volume
20
Issue
4
Publish Date
2011
Start Page
378
End Page
386
DOI
10.1002/pon.1738

Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®).

Cancer and treatments for cancer affect specific aspects of sexual functioning and intimacy; however, limited qualitative work has been done in diverse cancer populations. As part of an effort to improve measurement of self-reported sexual functioning, we explored the scope and importance of sexual functioning and intimacy to patients across cancer sites and along the continuum of care.We conducted 16 diagnosis- and sex-specific focus groups with patients recruited from the Duke University tumor registry and oncology/hematology clinics (N=109). A trained note taker produced field notes summarizing the discussions. An independent auditor verified field notes against written transcripts. The content of the discussions was analyzed for major themes by two independent coders.Across all cancers, the most commonly discussed cancer- or treatment-related effects on sexual functioning and intimacy were fatigue, treatment-related hair loss, weight gain and organ loss or scarring. Additional barriers were unique to particular diagnoses, such as shortness of breath in lung cancer, gastrointestinal problems in colorectal cancers and incontinence in prostate cancer. Sexual functioning and intimacy were considered important to quality of life. While most effects of cancer were considered negative, many participants identified improvements to intimacy after cancer.Overall evaluations of satisfaction with sex life did not always correspond to specific aspects of functioning (e.g. erectile dysfunction), presenting a challenge to researchers aiming to measure sexual functioning as an outcome. Health-care providers should not assume that level of sexual impairment determines sexual satisfaction and should explore cancer patients' sexual concerns directly.

Authors
Flynn, KE; Jeffery, DD; Keefe, FJ; Porter, LS; Shelby, RA; Fawzy, MR; Gosselin, TK; Reeve, BB; Weinfurt, KP
MLA Citation
Flynn, KE, Jeffery, DD, Keefe, FJ, Porter, LS, Shelby, RA, Fawzy, MR, Gosselin, TK, Reeve, BB, and Weinfurt, KP. "Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®)." Psychooncology 20.4 (April 2011): 378-386.
PMID
20878833
Source
epmc
Published In
Psycho-Oncology
Volume
20
Issue
4
Publish Date
2011
Start Page
378
End Page
386
DOI
10.1002/pon.1738

Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®).

Cancer and treatments for cancer affect specific aspects of sexual functioning and intimacy; however, limited qualitative work has been done in diverse cancer populations. As part of an effort to improve measurement of self-reported sexual functioning, we explored the scope and importance of sexual functioning and intimacy to patients across cancer sites and along the continuum of care.We conducted 16 diagnosis- and sex-specific focus groups with patients recruited from the Duke University tumor registry and oncology/hematology clinics (N=109). A trained note taker produced field notes summarizing the discussions. An independent auditor verified field notes against written transcripts. The content of the discussions was analyzed for major themes by two independent coders.Across all cancers, the most commonly discussed cancer- or treatment-related effects on sexual functioning and intimacy were fatigue, treatment-related hair loss, weight gain and organ loss or scarring. Additional barriers were unique to particular diagnoses, such as shortness of breath in lung cancer, gastrointestinal problems in colorectal cancers and incontinence in prostate cancer. Sexual functioning and intimacy were considered important to quality of life. While most effects of cancer were considered negative, many participants identified improvements to intimacy after cancer.Overall evaluations of satisfaction with sex life did not always correspond to specific aspects of functioning (e.g. erectile dysfunction), presenting a challenge to researchers aiming to measure sexual functioning as an outcome. Health-care providers should not assume that level of sexual impairment determines sexual satisfaction and should explore cancer patients' sexual concerns directly.

Authors
Flynn, KE; Jeffery, DD; Keefe, FJ; Porter, LS; Shelby, RA; Fawzy, MR; Gosselin, TK; Reeve, BB; Weinfurt, KP
MLA Citation
Flynn, KE, Jeffery, DD, Keefe, FJ, Porter, LS, Shelby, RA, Fawzy, MR, Gosselin, TK, Reeve, BB, and Weinfurt, KP. "Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®)." Psychooncology 20.4 (April 2011): 378-386.
PMID
20878833
Source
epmc
Published In
Psycho-Oncology
Volume
20
Issue
4
Publish Date
2011
Start Page
378
End Page
386
DOI
10.1002/pon.1738

Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®).

Cancer and treatments for cancer affect specific aspects of sexual functioning and intimacy; however, limited qualitative work has been done in diverse cancer populations. As part of an effort to improve measurement of self-reported sexual functioning, we explored the scope and importance of sexual functioning and intimacy to patients across cancer sites and along the continuum of care.We conducted 16 diagnosis- and sex-specific focus groups with patients recruited from the Duke University tumor registry and oncology/hematology clinics (N=109). A trained note taker produced field notes summarizing the discussions. An independent auditor verified field notes against written transcripts. The content of the discussions was analyzed for major themes by two independent coders.Across all cancers, the most commonly discussed cancer- or treatment-related effects on sexual functioning and intimacy were fatigue, treatment-related hair loss, weight gain and organ loss or scarring. Additional barriers were unique to particular diagnoses, such as shortness of breath in lung cancer, gastrointestinal problems in colorectal cancers and incontinence in prostate cancer. Sexual functioning and intimacy were considered important to quality of life. While most effects of cancer were considered negative, many participants identified improvements to intimacy after cancer.Overall evaluations of satisfaction with sex life did not always correspond to specific aspects of functioning (e.g. erectile dysfunction), presenting a challenge to researchers aiming to measure sexual functioning as an outcome. Health-care providers should not assume that level of sexual impairment determines sexual satisfaction and should explore cancer patients' sexual concerns directly.

Authors
Flynn, KE; Jeffery, DD; Keefe, FJ; Porter, LS; Shelby, RA; Fawzy, MR; Gosselin, TK; Reeve, BB; Weinfurt, KP
MLA Citation
Flynn, KE, Jeffery, DD, Keefe, FJ, Porter, LS, Shelby, RA, Fawzy, MR, Gosselin, TK, Reeve, BB, and Weinfurt, KP. "Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®)." Psychooncology 20.4 (April 2011): 378-386.
PMID
20878833
Source
epmc
Published In
Psycho-Oncology
Volume
20
Issue
4
Publish Date
2011
Start Page
378
End Page
386
DOI
10.1002/pon.1738

Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®).

Cancer and treatments for cancer affect specific aspects of sexual functioning and intimacy; however, limited qualitative work has been done in diverse cancer populations. As part of an effort to improve measurement of self-reported sexual functioning, we explored the scope and importance of sexual functioning and intimacy to patients across cancer sites and along the continuum of care.We conducted 16 diagnosis- and sex-specific focus groups with patients recruited from the Duke University tumor registry and oncology/hematology clinics (N=109). A trained note taker produced field notes summarizing the discussions. An independent auditor verified field notes against written transcripts. The content of the discussions was analyzed for major themes by two independent coders.Across all cancers, the most commonly discussed cancer- or treatment-related effects on sexual functioning and intimacy were fatigue, treatment-related hair loss, weight gain and organ loss or scarring. Additional barriers were unique to particular diagnoses, such as shortness of breath in lung cancer, gastrointestinal problems in colorectal cancers and incontinence in prostate cancer. Sexual functioning and intimacy were considered important to quality of life. While most effects of cancer were considered negative, many participants identified improvements to intimacy after cancer.Overall evaluations of satisfaction with sex life did not always correspond to specific aspects of functioning (e.g. erectile dysfunction), presenting a challenge to researchers aiming to measure sexual functioning as an outcome. Health-care providers should not assume that level of sexual impairment determines sexual satisfaction and should explore cancer patients' sexual concerns directly.

Authors
Flynn, KE; Jeffery, DD; Keefe, FJ; Porter, LS; Shelby, RA; Fawzy, MR; Gosselin, TK; Reeve, BB; Weinfurt, KP
MLA Citation
Flynn, KE, Jeffery, DD, Keefe, FJ, Porter, LS, Shelby, RA, Fawzy, MR, Gosselin, TK, Reeve, BB, and Weinfurt, KP. "Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®)." Psychooncology 20.4 (April 2011): 378-386.
PMID
20878833
Source
epmc
Published In
Psycho-Oncology
Volume
20
Issue
4
Publish Date
2011
Start Page
378
End Page
386
DOI
10.1002/pon.1738

Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®).

Cancer and treatments for cancer affect specific aspects of sexual functioning and intimacy; however, limited qualitative work has been done in diverse cancer populations. As part of an effort to improve measurement of self-reported sexual functioning, we explored the scope and importance of sexual functioning and intimacy to patients across cancer sites and along the continuum of care.We conducted 16 diagnosis- and sex-specific focus groups with patients recruited from the Duke University tumor registry and oncology/hematology clinics (N=109). A trained note taker produced field notes summarizing the discussions. An independent auditor verified field notes against written transcripts. The content of the discussions was analyzed for major themes by two independent coders.Across all cancers, the most commonly discussed cancer- or treatment-related effects on sexual functioning and intimacy were fatigue, treatment-related hair loss, weight gain and organ loss or scarring. Additional barriers were unique to particular diagnoses, such as shortness of breath in lung cancer, gastrointestinal problems in colorectal cancers and incontinence in prostate cancer. Sexual functioning and intimacy were considered important to quality of life. While most effects of cancer were considered negative, many participants identified improvements to intimacy after cancer.Overall evaluations of satisfaction with sex life did not always correspond to specific aspects of functioning (e.g. erectile dysfunction), presenting a challenge to researchers aiming to measure sexual functioning as an outcome. Health-care providers should not assume that level of sexual impairment determines sexual satisfaction and should explore cancer patients' sexual concerns directly.

Authors
Flynn, KE; Jeffery, DD; Keefe, FJ; Porter, LS; Shelby, RA; Fawzy, MR; Gosselin, TK; Reeve, BB; Weinfurt, KP
MLA Citation
Flynn, KE, Jeffery, DD, Keefe, FJ, Porter, LS, Shelby, RA, Fawzy, MR, Gosselin, TK, Reeve, BB, and Weinfurt, KP. "Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®)." Psycho-oncology 20.4 (April 2011): 378-386.
PMID
20878833
Source
pubmed
Published In
Psycho-Oncology
Volume
20
Issue
4
Publish Date
2011
Start Page
378
End Page
386
DOI
10.1002/pon.1738

Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®).

Cancer and treatments for cancer affect specific aspects of sexual functioning and intimacy; however, limited qualitative work has been done in diverse cancer populations. As part of an effort to improve measurement of self-reported sexual functioning, we explored the scope and importance of sexual functioning and intimacy to patients across cancer sites and along the continuum of care.We conducted 16 diagnosis- and sex-specific focus groups with patients recruited from the Duke University tumor registry and oncology/hematology clinics (N=109). A trained note taker produced field notes summarizing the discussions. An independent auditor verified field notes against written transcripts. The content of the discussions was analyzed for major themes by two independent coders.Across all cancers, the most commonly discussed cancer- or treatment-related effects on sexual functioning and intimacy were fatigue, treatment-related hair loss, weight gain and organ loss or scarring. Additional barriers were unique to particular diagnoses, such as shortness of breath in lung cancer, gastrointestinal problems in colorectal cancers and incontinence in prostate cancer. Sexual functioning and intimacy were considered important to quality of life. While most effects of cancer were considered negative, many participants identified improvements to intimacy after cancer.Overall evaluations of satisfaction with sex life did not always correspond to specific aspects of functioning (e.g. erectile dysfunction), presenting a challenge to researchers aiming to measure sexual functioning as an outcome. Health-care providers should not assume that level of sexual impairment determines sexual satisfaction and should explore cancer patients' sexual concerns directly.

Authors
Flynn, KE; Jeffery, DD; Keefe, FJ; Porter, LS; Shelby, RA; Fawzy, MR; Gosselin, TK; Reeve, BB; Weinfurt, KP
MLA Citation
Flynn, KE, Jeffery, DD, Keefe, FJ, Porter, LS, Shelby, RA, Fawzy, MR, Gosselin, TK, Reeve, BB, and Weinfurt, KP. "Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®)." Psycho-oncology 20.4 (April 2011): 378-386.
PMID
20878833
Source
pubmed
Published In
Psycho-Oncology
Volume
20
Issue
4
Publish Date
2011
Start Page
378
End Page
386
DOI
10.1002/pon.1738

Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®).

Cancer and treatments for cancer affect specific aspects of sexual functioning and intimacy; however, limited qualitative work has been done in diverse cancer populations. As part of an effort to improve measurement of self-reported sexual functioning, we explored the scope and importance of sexual functioning and intimacy to patients across cancer sites and along the continuum of care.We conducted 16 diagnosis- and sex-specific focus groups with patients recruited from the Duke University tumor registry and oncology/hematology clinics (N=109). A trained note taker produced field notes summarizing the discussions. An independent auditor verified field notes against written transcripts. The content of the discussions was analyzed for major themes by two independent coders.Across all cancers, the most commonly discussed cancer- or treatment-related effects on sexual functioning and intimacy were fatigue, treatment-related hair loss, weight gain and organ loss or scarring. Additional barriers were unique to particular diagnoses, such as shortness of breath in lung cancer, gastrointestinal problems in colorectal cancers and incontinence in prostate cancer. Sexual functioning and intimacy were considered important to quality of life. While most effects of cancer were considered negative, many participants identified improvements to intimacy after cancer.Overall evaluations of satisfaction with sex life did not always correspond to specific aspects of functioning (e.g. erectile dysfunction), presenting a challenge to researchers aiming to measure sexual functioning as an outcome. Health-care providers should not assume that level of sexual impairment determines sexual satisfaction and should explore cancer patients' sexual concerns directly.

Authors
Flynn, KE; Jeffery, DD; Keefe, FJ; Porter, LS; Shelby, RA; Fawzy, MR; Gosselin, TK; Reeve, BB; Weinfurt, KP
MLA Citation
Flynn, KE, Jeffery, DD, Keefe, FJ, Porter, LS, Shelby, RA, Fawzy, MR, Gosselin, TK, Reeve, BB, and Weinfurt, KP. "Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®)." Psycho-oncology 20.4 (April 2011): 378-386.
PMID
20878833
Source
pubmed
Published In
Psycho-Oncology
Volume
20
Issue
4
Publish Date
2011
Start Page
378
End Page
386
DOI
10.1002/pon.1738

Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®).

Cancer and treatments for cancer affect specific aspects of sexual functioning and intimacy; however, limited qualitative work has been done in diverse cancer populations. As part of an effort to improve measurement of self-reported sexual functioning, we explored the scope and importance of sexual functioning and intimacy to patients across cancer sites and along the continuum of care.We conducted 16 diagnosis- and sex-specific focus groups with patients recruited from the Duke University tumor registry and oncology/hematology clinics (N=109). A trained note taker produced field notes summarizing the discussions. An independent auditor verified field notes against written transcripts. The content of the discussions was analyzed for major themes by two independent coders.Across all cancers, the most commonly discussed cancer- or treatment-related effects on sexual functioning and intimacy were fatigue, treatment-related hair loss, weight gain and organ loss or scarring. Additional barriers were unique to particular diagnoses, such as shortness of breath in lung cancer, gastrointestinal problems in colorectal cancers and incontinence in prostate cancer. Sexual functioning and intimacy were considered important to quality of life. While most effects of cancer were considered negative, many participants identified improvements to intimacy after cancer.Overall evaluations of satisfaction with sex life did not always correspond to specific aspects of functioning (e.g. erectile dysfunction), presenting a challenge to researchers aiming to measure sexual functioning as an outcome. Health-care providers should not assume that level of sexual impairment determines sexual satisfaction and should explore cancer patients' sexual concerns directly.

Authors
Flynn, KE; Jeffery, DD; Keefe, FJ; Porter, LS; Shelby, RA; Fawzy, MR; Gosselin, TK; Reeve, BB; Weinfurt, KP
MLA Citation
Flynn, KE, Jeffery, DD, Keefe, FJ, Porter, LS, Shelby, RA, Fawzy, MR, Gosselin, TK, Reeve, BB, and Weinfurt, KP. "Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®)." Psycho-oncology 20.4 (April 2011): 378-386.
PMID
20878833
Source
pubmed
Published In
Psycho-Oncology
Volume
20
Issue
4
Publish Date
2011
Start Page
378
End Page
386
DOI
10.1002/pon.1738

Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®).

Cancer and treatments for cancer affect specific aspects of sexual functioning and intimacy; however, limited qualitative work has been done in diverse cancer populations. As part of an effort to improve measurement of self-reported sexual functioning, we explored the scope and importance of sexual functioning and intimacy to patients across cancer sites and along the continuum of care.We conducted 16 diagnosis- and sex-specific focus groups with patients recruited from the Duke University tumor registry and oncology/hematology clinics (N=109). A trained note taker produced field notes summarizing the discussions. An independent auditor verified field notes against written transcripts. The content of the discussions was analyzed for major themes by two independent coders.Across all cancers, the most commonly discussed cancer- or treatment-related effects on sexual functioning and intimacy were fatigue, treatment-related hair loss, weight gain and organ loss or scarring. Additional barriers were unique to particular diagnoses, such as shortness of breath in lung cancer, gastrointestinal problems in colorectal cancers and incontinence in prostate cancer. Sexual functioning and intimacy were considered important to quality of life. While most effects of cancer were considered negative, many participants identified improvements to intimacy after cancer.Overall evaluations of satisfaction with sex life did not always correspond to specific aspects of functioning (e.g. erectile dysfunction), presenting a challenge to researchers aiming to measure sexual functioning as an outcome. Health-care providers should not assume that level of sexual impairment determines sexual satisfaction and should explore cancer patients' sexual concerns directly.

Authors
Flynn, KE; Jeffery, DD; Keefe, FJ; Porter, LS; Shelby, RA; Fawzy, MR; Gosselin, TK; Reeve, BB; Weinfurt, KP
MLA Citation
Flynn, KE, Jeffery, DD, Keefe, FJ, Porter, LS, Shelby, RA, Fawzy, MR, Gosselin, TK, Reeve, BB, and Weinfurt, KP. "Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®)." Psychooncology 20.4 (April 2011): 378-386.
PMID
20878833
Source
pubmed
Published In
Psycho-Oncology
Volume
20
Issue
4
Publish Date
2011
Start Page
378
End Page
386
DOI
10.1002/pon.1738

Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®).

Cancer and treatments for cancer affect specific aspects of sexual functioning and intimacy; however, limited qualitative work has been done in diverse cancer populations. As part of an effort to improve measurement of self-reported sexual functioning, we explored the scope and importance of sexual functioning and intimacy to patients across cancer sites and along the continuum of care.We conducted 16 diagnosis- and sex-specific focus groups with patients recruited from the Duke University tumor registry and oncology/hematology clinics (N=109). A trained note taker produced field notes summarizing the discussions. An independent auditor verified field notes against written transcripts. The content of the discussions was analyzed for major themes by two independent coders.Across all cancers, the most commonly discussed cancer- or treatment-related effects on sexual functioning and intimacy were fatigue, treatment-related hair loss, weight gain and organ loss or scarring. Additional barriers were unique to particular diagnoses, such as shortness of breath in lung cancer, gastrointestinal problems in colorectal cancers and incontinence in prostate cancer. Sexual functioning and intimacy were considered important to quality of life. While most effects of cancer were considered negative, many participants identified improvements to intimacy after cancer.Overall evaluations of satisfaction with sex life did not always correspond to specific aspects of functioning (e.g. erectile dysfunction), presenting a challenge to researchers aiming to measure sexual functioning as an outcome. Health-care providers should not assume that level of sexual impairment determines sexual satisfaction and should explore cancer patients' sexual concerns directly.

Authors
Flynn, KE; Jeffery, DD; Keefe, FJ; Porter, LS; Shelby, RA; Fawzy, MR; Gosselin, TK; Reeve, BB; Weinfurt, KP
MLA Citation
Flynn, KE, Jeffery, DD, Keefe, FJ, Porter, LS, Shelby, RA, Fawzy, MR, Gosselin, TK, Reeve, BB, and Weinfurt, KP. "Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®)." Psychooncology 20.4 (April 2011): 378-386.
PMID
20878833
Source
pubmed
Published In
Psycho-Oncology
Volume
20
Issue
4
Publish Date
2011
Start Page
378
End Page
386
DOI
10.1002/pon.1738

Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®).

Cancer and treatments for cancer affect specific aspects of sexual functioning and intimacy; however, limited qualitative work has been done in diverse cancer populations. As part of an effort to improve measurement of self-reported sexual functioning, we explored the scope and importance of sexual functioning and intimacy to patients across cancer sites and along the continuum of care.We conducted 16 diagnosis- and sex-specific focus groups with patients recruited from the Duke University tumor registry and oncology/hematology clinics (N=109). A trained note taker produced field notes summarizing the discussions. An independent auditor verified field notes against written transcripts. The content of the discussions was analyzed for major themes by two independent coders.Across all cancers, the most commonly discussed cancer- or treatment-related effects on sexual functioning and intimacy were fatigue, treatment-related hair loss, weight gain and organ loss or scarring. Additional barriers were unique to particular diagnoses, such as shortness of breath in lung cancer, gastrointestinal problems in colorectal cancers and incontinence in prostate cancer. Sexual functioning and intimacy were considered important to quality of life. While most effects of cancer were considered negative, many participants identified improvements to intimacy after cancer.Overall evaluations of satisfaction with sex life did not always correspond to specific aspects of functioning (e.g. erectile dysfunction), presenting a challenge to researchers aiming to measure sexual functioning as an outcome. Health-care providers should not assume that level of sexual impairment determines sexual satisfaction and should explore cancer patients' sexual concerns directly.

Authors
Flynn, KE; Jeffery, DD; Keefe, FJ; Porter, LS; Shelby, RA; Fawzy, MR; Gosselin, TK; Reeve, BB; Weinfurt, KP
MLA Citation
Flynn, KE, Jeffery, DD, Keefe, FJ, Porter, LS, Shelby, RA, Fawzy, MR, Gosselin, TK, Reeve, BB, and Weinfurt, KP. "Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®)." Psychooncology 20.4 (April 2011): 378-386.
PMID
20878833
Source
pubmed
Published In
Psycho-Oncology
Volume
20
Issue
4
Publish Date
2011
Start Page
378
End Page
386
DOI
10.1002/pon.1738

Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®).

Cancer and treatments for cancer affect specific aspects of sexual functioning and intimacy; however, limited qualitative work has been done in diverse cancer populations. As part of an effort to improve measurement of self-reported sexual functioning, we explored the scope and importance of sexual functioning and intimacy to patients across cancer sites and along the continuum of care.We conducted 16 diagnosis- and sex-specific focus groups with patients recruited from the Duke University tumor registry and oncology/hematology clinics (N=109). A trained note taker produced field notes summarizing the discussions. An independent auditor verified field notes against written transcripts. The content of the discussions was analyzed for major themes by two independent coders.Across all cancers, the most commonly discussed cancer- or treatment-related effects on sexual functioning and intimacy were fatigue, treatment-related hair loss, weight gain and organ loss or scarring. Additional barriers were unique to particular diagnoses, such as shortness of breath in lung cancer, gastrointestinal problems in colorectal cancers and incontinence in prostate cancer. Sexual functioning and intimacy were considered important to quality of life. While most effects of cancer were considered negative, many participants identified improvements to intimacy after cancer.Overall evaluations of satisfaction with sex life did not always correspond to specific aspects of functioning (e.g. erectile dysfunction), presenting a challenge to researchers aiming to measure sexual functioning as an outcome. Health-care providers should not assume that level of sexual impairment determines sexual satisfaction and should explore cancer patients' sexual concerns directly.

Authors
Flynn, KE; Jeffery, DD; Keefe, FJ; Porter, LS; Shelby, RA; Fawzy, MR; Gosselin, TK; Reeve, BB; Weinfurt, KP
MLA Citation
Flynn, KE, Jeffery, DD, Keefe, FJ, Porter, LS, Shelby, RA, Fawzy, MR, Gosselin, TK, Reeve, BB, and Weinfurt, KP. "Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®)." Psychooncology 20.4 (April 2011): 378-386.
PMID
20878833
Source
pubmed
Published In
Psycho-Oncology
Volume
20
Issue
4
Publish Date
2011
Start Page
378
End Page
386
DOI
10.1002/pon.1738

Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®).

Cancer and treatments for cancer affect specific aspects of sexual functioning and intimacy; however, limited qualitative work has been done in diverse cancer populations. As part of an effort to improve measurement of self-reported sexual functioning, we explored the scope and importance of sexual functioning and intimacy to patients across cancer sites and along the continuum of care.We conducted 16 diagnosis- and sex-specific focus groups with patients recruited from the Duke University tumor registry and oncology/hematology clinics (N=109). A trained note taker produced field notes summarizing the discussions. An independent auditor verified field notes against written transcripts. The content of the discussions was analyzed for major themes by two independent coders.Across all cancers, the most commonly discussed cancer- or treatment-related effects on sexual functioning and intimacy were fatigue, treatment-related hair loss, weight gain and organ loss or scarring. Additional barriers were unique to particular diagnoses, such as shortness of breath in lung cancer, gastrointestinal problems in colorectal cancers and incontinence in prostate cancer. Sexual functioning and intimacy were considered important to quality of life. While most effects of cancer were considered negative, many participants identified improvements to intimacy after cancer.Overall evaluations of satisfaction with sex life did not always correspond to specific aspects of functioning (e.g. erectile dysfunction), presenting a challenge to researchers aiming to measure sexual functioning as an outcome. Health-care providers should not assume that level of sexual impairment determines sexual satisfaction and should explore cancer patients' sexual concerns directly.

Authors
Flynn, KE; Jeffery, DD; Keefe, FJ; Porter, LS; Shelby, RA; Fawzy, MR; Gosselin, TK; Reeve, BB; Weinfurt, KP
MLA Citation
Flynn, KE, Jeffery, DD, Keefe, FJ, Porter, LS, Shelby, RA, Fawzy, MR, Gosselin, TK, Reeve, BB, and Weinfurt, KP. "Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®)." Psycho-oncology 20.4 (April 2011): 378-386.
PMID
20878833
Source
pubmed
Published In
Psycho-Oncology
Volume
20
Issue
4
Publish Date
2011
Start Page
378
End Page
386
DOI
10.1002/pon.1738

Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®).

Cancer and treatments for cancer affect specific aspects of sexual functioning and intimacy; however, limited qualitative work has been done in diverse cancer populations. As part of an effort to improve measurement of self-reported sexual functioning, we explored the scope and importance of sexual functioning and intimacy to patients across cancer sites and along the continuum of care.We conducted 16 diagnosis- and sex-specific focus groups with patients recruited from the Duke University tumor registry and oncology/hematology clinics (N=109). A trained note taker produced field notes summarizing the discussions. An independent auditor verified field notes against written transcripts. The content of the discussions was analyzed for major themes by two independent coders.Across all cancers, the most commonly discussed cancer- or treatment-related effects on sexual functioning and intimacy were fatigue, treatment-related hair loss, weight gain and organ loss or scarring. Additional barriers were unique to particular diagnoses, such as shortness of breath in lung cancer, gastrointestinal problems in colorectal cancers and incontinence in prostate cancer. Sexual functioning and intimacy were considered important to quality of life. While most effects of cancer were considered negative, many participants identified improvements to intimacy after cancer.Overall evaluations of satisfaction with sex life did not always correspond to specific aspects of functioning (e.g. erectile dysfunction), presenting a challenge to researchers aiming to measure sexual functioning as an outcome. Health-care providers should not assume that level of sexual impairment determines sexual satisfaction and should explore cancer patients' sexual concerns directly.

Authors
Flynn, KE; Jeffery, DD; Keefe, FJ; Porter, LS; Shelby, RA; Fawzy, MR; Gosselin, TK; Reeve, BB; Weinfurt, KP
MLA Citation
Flynn, KE, Jeffery, DD, Keefe, FJ, Porter, LS, Shelby, RA, Fawzy, MR, Gosselin, TK, Reeve, BB, and Weinfurt, KP. "Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®)." Psycho-oncology 20.4 (April 2011): 378-386.
PMID
20878833
Source
pubmed
Published In
Psycho-Oncology
Volume
20
Issue
4
Publish Date
2011
Start Page
378
End Page
386
DOI
10.1002/pon.1738

Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®).

Cancer and treatments for cancer affect specific aspects of sexual functioning and intimacy; however, limited qualitative work has been done in diverse cancer populations. As part of an effort to improve measurement of self-reported sexual functioning, we explored the scope and importance of sexual functioning and intimacy to patients across cancer sites and along the continuum of care.We conducted 16 diagnosis- and sex-specific focus groups with patients recruited from the Duke University tumor registry and oncology/hematology clinics (N=109). A trained note taker produced field notes summarizing the discussions. An independent auditor verified field notes against written transcripts. The content of the discussions was analyzed for major themes by two independent coders.Across all cancers, the most commonly discussed cancer- or treatment-related effects on sexual functioning and intimacy were fatigue, treatment-related hair loss, weight gain and organ loss or scarring. Additional barriers were unique to particular diagnoses, such as shortness of breath in lung cancer, gastrointestinal problems in colorectal cancers and incontinence in prostate cancer. Sexual functioning and intimacy were considered important to quality of life. While most effects of cancer were considered negative, many participants identified improvements to intimacy after cancer.Overall evaluations of satisfaction with sex life did not always correspond to specific aspects of functioning (e.g. erectile dysfunction), presenting a challenge to researchers aiming to measure sexual functioning as an outcome. Health-care providers should not assume that level of sexual impairment determines sexual satisfaction and should explore cancer patients' sexual concerns directly.

Authors
Flynn, KE; Jeffery, DD; Keefe, FJ; Porter, LS; Shelby, RA; Fawzy, MR; Gosselin, TK; Reeve, BB; Weinfurt, KP
MLA Citation
Flynn, KE, Jeffery, DD, Keefe, FJ, Porter, LS, Shelby, RA, Fawzy, MR, Gosselin, TK, Reeve, BB, and Weinfurt, KP. "Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®)." Psycho-oncology 20.4 (April 2011): 378-386.
PMID
20878833
Source
pubmed
Published In
Psycho-Oncology
Volume
20
Issue
4
Publish Date
2011
Start Page
378
End Page
386
DOI
10.1002/pon.1738

Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®).

Cancer and treatments for cancer affect specific aspects of sexual functioning and intimacy; however, limited qualitative work has been done in diverse cancer populations. As part of an effort to improve measurement of self-reported sexual functioning, we explored the scope and importance of sexual functioning and intimacy to patients across cancer sites and along the continuum of care.We conducted 16 diagnosis- and sex-specific focus groups with patients recruited from the Duke University tumor registry and oncology/hematology clinics (N=109). A trained note taker produced field notes summarizing the discussions. An independent auditor verified field notes against written transcripts. The content of the discussions was analyzed for major themes by two independent coders.Across all cancers, the most commonly discussed cancer- or treatment-related effects on sexual functioning and intimacy were fatigue, treatment-related hair loss, weight gain and organ loss or scarring. Additional barriers were unique to particular diagnoses, such as shortness of breath in lung cancer, gastrointestinal problems in colorectal cancers and incontinence in prostate cancer. Sexual functioning and intimacy were considered important to quality of life. While most effects of cancer were considered negative, many participants identified improvements to intimacy after cancer.Overall evaluations of satisfaction with sex life did not always correspond to specific aspects of functioning (e.g. erectile dysfunction), presenting a challenge to researchers aiming to measure sexual functioning as an outcome. Health-care providers should not assume that level of sexual impairment determines sexual satisfaction and should explore cancer patients' sexual concerns directly.

Authors
Flynn, KE; Jeffery, DD; Keefe, FJ; Porter, LS; Shelby, RA; Fawzy, MR; Gosselin, TK; Reeve, BB; Weinfurt, KP
MLA Citation
Flynn, KE, Jeffery, DD, Keefe, FJ, Porter, LS, Shelby, RA, Fawzy, MR, Gosselin, TK, Reeve, BB, and Weinfurt, KP. "Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®)." Psycho-oncology 20.4 (April 2011): 378-386.
PMID
20878833
Source
pubmed
Published In
Psycho-Oncology
Volume
20
Issue
4
Publish Date
2011
Start Page
378
End Page
386
DOI
10.1002/pon.1738

Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®).

Cancer and treatments for cancer affect specific aspects of sexual functioning and intimacy; however, limited qualitative work has been done in diverse cancer populations. As part of an effort to improve measurement of self-reported sexual functioning, we explored the scope and importance of sexual functioning and intimacy to patients across cancer sites and along the continuum of care.We conducted 16 diagnosis- and sex-specific focus groups with patients recruited from the Duke University tumor registry and oncology/hematology clinics (N=109). A trained note taker produced field notes summarizing the discussions. An independent auditor verified field notes against written transcripts. The content of the discussions was analyzed for major themes by two independent coders.Across all cancers, the most commonly discussed cancer- or treatment-related effects on sexual functioning and intimacy were fatigue, treatment-related hair loss, weight gain and organ loss or scarring. Additional barriers were unique to particular diagnoses, such as shortness of breath in lung cancer, gastrointestinal problems in colorectal cancers and incontinence in prostate cancer. Sexual functioning and intimacy were considered important to quality of life. While most effects of cancer were considered negative, many participants identified improvements to intimacy after cancer.Overall evaluations of satisfaction with sex life did not always correspond to specific aspects of functioning (e.g. erectile dysfunction), presenting a challenge to researchers aiming to measure sexual functioning as an outcome. Health-care providers should not assume that level of sexual impairment determines sexual satisfaction and should explore cancer patients' sexual concerns directly.

Authors
Flynn, KE; Jeffery, DD; Keefe, FJ; Porter, LS; Shelby, RA; Fawzy, MR; Gosselin, TK; Reeve, BB; Weinfurt, KP
MLA Citation
Flynn, KE, Jeffery, DD, Keefe, FJ, Porter, LS, Shelby, RA, Fawzy, MR, Gosselin, TK, Reeve, BB, and Weinfurt, KP. "Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®)." Psychooncology 20.4 (April 2011): 378-386.
PMID
20878833
Source
pubmed
Published In
Psycho-Oncology
Volume
20
Issue
4
Publish Date
2011
Start Page
378
End Page
386
DOI
10.1002/pon.1738

Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®).

Cancer and treatments for cancer affect specific aspects of sexual functioning and intimacy; however, limited qualitative work has been done in diverse cancer populations. As part of an effort to improve measurement of self-reported sexual functioning, we explored the scope and importance of sexual functioning and intimacy to patients across cancer sites and along the continuum of care.We conducted 16 diagnosis- and sex-specific focus groups with patients recruited from the Duke University tumor registry and oncology/hematology clinics (N=109). A trained note taker produced field notes summarizing the discussions. An independent auditor verified field notes against written transcripts. The content of the discussions was analyzed for major themes by two independent coders.Across all cancers, the most commonly discussed cancer- or treatment-related effects on sexual functioning and intimacy were fatigue, treatment-related hair loss, weight gain and organ loss or scarring. Additional barriers were unique to particular diagnoses, such as shortness of breath in lung cancer, gastrointestinal problems in colorectal cancers and incontinence in prostate cancer. Sexual functioning and intimacy were considered important to quality of life. While most effects of cancer were considered negative, many participants identified improvements to intimacy after cancer.Overall evaluations of satisfaction with sex life did not always correspond to specific aspects of functioning (e.g. erectile dysfunction), presenting a challenge to researchers aiming to measure sexual functioning as an outcome. Health-care providers should not assume that level of sexual impairment determines sexual satisfaction and should explore cancer patients' sexual concerns directly.

Authors
Flynn, KE; Jeffery, DD; Keefe, FJ; Porter, LS; Shelby, RA; Fawzy, MR; Gosselin, TK; Reeve, BB; Weinfurt, KP
MLA Citation
Flynn, KE, Jeffery, DD, Keefe, FJ, Porter, LS, Shelby, RA, Fawzy, MR, Gosselin, TK, Reeve, BB, and Weinfurt, KP. "Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®)." Psychooncology 20.4 (April 2011): 378-386.
PMID
20878833
Source
pubmed
Published In
Psycho-Oncology
Volume
20
Issue
4
Publish Date
2011
Start Page
378
End Page
386
DOI
10.1002/pon.1738

Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®).

Cancer and treatments for cancer affect specific aspects of sexual functioning and intimacy; however, limited qualitative work has been done in diverse cancer populations. As part of an effort to improve measurement of self-reported sexual functioning, we explored the scope and importance of sexual functioning and intimacy to patients across cancer sites and along the continuum of care.We conducted 16 diagnosis- and sex-specific focus groups with patients recruited from the Duke University tumor registry and oncology/hematology clinics (N=109). A trained note taker produced field notes summarizing the discussions. An independent auditor verified field notes against written transcripts. The content of the discussions was analyzed for major themes by two independent coders.Across all cancers, the most commonly discussed cancer- or treatment-related effects on sexual functioning and intimacy were fatigue, treatment-related hair loss, weight gain and organ loss or scarring. Additional barriers were unique to particular diagnoses, such as shortness of breath in lung cancer, gastrointestinal problems in colorectal cancers and incontinence in prostate cancer. Sexual functioning and intimacy were considered important to quality of life. While most effects of cancer were considered negative, many participants identified improvements to intimacy after cancer.Overall evaluations of satisfaction with sex life did not always correspond to specific aspects of functioning (e.g. erectile dysfunction), presenting a challenge to researchers aiming to measure sexual functioning as an outcome. Health-care providers should not assume that level of sexual impairment determines sexual satisfaction and should explore cancer patients' sexual concerns directly.

Authors
Flynn, KE; Jeffery, DD; Keefe, FJ; Porter, LS; Shelby, RA; Fawzy, MR; Gosselin, TK; Reeve, BB; Weinfurt, KP
MLA Citation
Flynn, KE, Jeffery, DD, Keefe, FJ, Porter, LS, Shelby, RA, Fawzy, MR, Gosselin, TK, Reeve, BB, and Weinfurt, KP. "Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®)." Psychooncology 20.4 (April 2011): 378-386.
PMID
20878833
Source
pubmed
Published In
Psycho-Oncology
Volume
20
Issue
4
Publish Date
2011
Start Page
378
End Page
386
DOI
10.1002/pon.1738

Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®).

Cancer and treatments for cancer affect specific aspects of sexual functioning and intimacy; however, limited qualitative work has been done in diverse cancer populations. As part of an effort to improve measurement of self-reported sexual functioning, we explored the scope and importance of sexual functioning and intimacy to patients across cancer sites and along the continuum of care.We conducted 16 diagnosis- and sex-specific focus groups with patients recruited from the Duke University tumor registry and oncology/hematology clinics (N=109). A trained note taker produced field notes summarizing the discussions. An independent auditor verified field notes against written transcripts. The content of the discussions was analyzed for major themes by two independent coders.Across all cancers, the most commonly discussed cancer- or treatment-related effects on sexual functioning and intimacy were fatigue, treatment-related hair loss, weight gain and organ loss or scarring. Additional barriers were unique to particular diagnoses, such as shortness of breath in lung cancer, gastrointestinal problems in colorectal cancers and incontinence in prostate cancer. Sexual functioning and intimacy were considered important to quality of life. While most effects of cancer were considered negative, many participants identified improvements to intimacy after cancer.Overall evaluations of satisfaction with sex life did not always correspond to specific aspects of functioning (e.g. erectile dysfunction), presenting a challenge to researchers aiming to measure sexual functioning as an outcome. Health-care providers should not assume that level of sexual impairment determines sexual satisfaction and should explore cancer patients' sexual concerns directly.

Authors
Flynn, KE; Jeffery, DD; Keefe, FJ; Porter, LS; Shelby, RA; Fawzy, MR; Gosselin, TK; Reeve, BB; Weinfurt, KP
MLA Citation
Flynn, KE, Jeffery, DD, Keefe, FJ, Porter, LS, Shelby, RA, Fawzy, MR, Gosselin, TK, Reeve, BB, and Weinfurt, KP. "Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®)." Psychooncology 20.4 (April 2011): 378-386.
PMID
20878833
Source
pubmed
Published In
Psycho-Oncology
Volume
20
Issue
4
Publish Date
2011
Start Page
378
End Page
386
DOI
10.1002/pon.1738

Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®).

OBJECTIVE: Cancer and treatments for cancer affect specific aspects of sexual functioning and intimacy; however, limited qualitative work has been done in diverse cancer populations. As part of an effort to improve measurement of self-reported sexual functioning, we explored the scope and importance of sexual functioning and intimacy to patients across cancer sites and along the continuum of care. METHODS: We conducted 16 diagnosis- and sex-specific focus groups with patients recruited from the Duke University tumor registry and oncology/hematology clinics (N=109). A trained note taker produced field notes summarizing the discussions. An independent auditor verified field notes against written transcripts. The content of the discussions was analyzed for major themes by two independent coders. RESULTS: Across all cancers, the most commonly discussed cancer- or treatment-related effects on sexual functioning and intimacy were fatigue, treatment-related hair loss, weight gain and organ loss or scarring. Additional barriers were unique to particular diagnoses, such as shortness of breath in lung cancer, gastrointestinal problems in colorectal cancers and incontinence in prostate cancer. Sexual functioning and intimacy were considered important to quality of life. While most effects of cancer were considered negative, many participants identified improvements to intimacy after cancer. CONCLUSION: Overall evaluations of satisfaction with sex life did not always correspond to specific aspects of functioning (e.g. erectile dysfunction), presenting a challenge to researchers aiming to measure sexual functioning as an outcome. Health-care providers should not assume that level of sexual impairment determines sexual satisfaction and should explore cancer patients' sexual concerns directly.

Authors
Flynn, KE; Jeffery, DD; Keefe, FJ; Porter, LS; Shelby, RA; Fawzy, MR; Gosselin, TK; Reeve, BB; Weinfurt, KP
MLA Citation
Flynn, KE, Jeffery, DD, Keefe, FJ, Porter, LS, Shelby, RA, Fawzy, MR, Gosselin, TK, Reeve, BB, and Weinfurt, KP. "Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®)." Psycho-oncology 20.4 (April 2011): 378-386.
PMID
20878833
Source
epmc
Published In
Psycho-Oncology
Volume
20
Issue
4
Publish Date
2011
Start Page
378
End Page
386
DOI
10.1002/pon.1738

Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®).

OBJECTIVE: Cancer and treatments for cancer affect specific aspects of sexual functioning and intimacy; however, limited qualitative work has been done in diverse cancer populations. As part of an effort to improve measurement of self-reported sexual functioning, we explored the scope and importance of sexual functioning and intimacy to patients across cancer sites and along the continuum of care. METHODS: We conducted 16 diagnosis- and sex-specific focus groups with patients recruited from the Duke University tumor registry and oncology/hematology clinics (N=109). A trained note taker produced field notes summarizing the discussions. An independent auditor verified field notes against written transcripts. The content of the discussions was analyzed for major themes by two independent coders. RESULTS: Across all cancers, the most commonly discussed cancer- or treatment-related effects on sexual functioning and intimacy were fatigue, treatment-related hair loss, weight gain and organ loss or scarring. Additional barriers were unique to particular diagnoses, such as shortness of breath in lung cancer, gastrointestinal problems in colorectal cancers and incontinence in prostate cancer. Sexual functioning and intimacy were considered important to quality of life. While most effects of cancer were considered negative, many participants identified improvements to intimacy after cancer. CONCLUSION: Overall evaluations of satisfaction with sex life did not always correspond to specific aspects of functioning (e.g. erectile dysfunction), presenting a challenge to researchers aiming to measure sexual functioning as an outcome. Health-care providers should not assume that level of sexual impairment determines sexual satisfaction and should explore cancer patients' sexual concerns directly.

Authors
Flynn, KE; Jeffery, DD; Keefe, FJ; Porter, LS; Shelby, RA; Fawzy, MR; Gosselin, TK; Reeve, BB; Weinfurt, KP
MLA Citation
Flynn, KE, Jeffery, DD, Keefe, FJ, Porter, LS, Shelby, RA, Fawzy, MR, Gosselin, TK, Reeve, BB, and Weinfurt, KP. "Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®)." Psycho-oncology 20.4 (April 2011): 378-386.
PMID
20878833
Source
epmc
Published In
Psycho-Oncology
Volume
20
Issue
4
Publish Date
2011
Start Page
378
End Page
386
DOI
10.1002/pon.1738

Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®).

OBJECTIVE: Cancer and treatments for cancer affect specific aspects of sexual functioning and intimacy; however, limited qualitative work has been done in diverse cancer populations. As part of an effort to improve measurement of self-reported sexual functioning, we explored the scope and importance of sexual functioning and intimacy to patients across cancer sites and along the continuum of care. METHODS: We conducted 16 diagnosis- and sex-specific focus groups with patients recruited from the Duke University tumor registry and oncology/hematology clinics (N=109). A trained note taker produced field notes summarizing the discussions. An independent auditor verified field notes against written transcripts. The content of the discussions was analyzed for major themes by two independent coders. RESULTS: Across all cancers, the most commonly discussed cancer- or treatment-related effects on sexual functioning and intimacy were fatigue, treatment-related hair loss, weight gain and organ loss or scarring. Additional barriers were unique to particular diagnoses, such as shortness of breath in lung cancer, gastrointestinal problems in colorectal cancers and incontinence in prostate cancer. Sexual functioning and intimacy were considered important to quality of life. While most effects of cancer were considered negative, many participants identified improvements to intimacy after cancer. CONCLUSION: Overall evaluations of satisfaction with sex life did not always correspond to specific aspects of functioning (e.g. erectile dysfunction), presenting a challenge to researchers aiming to measure sexual functioning as an outcome. Health-care providers should not assume that level of sexual impairment determines sexual satisfaction and should explore cancer patients' sexual concerns directly.

Authors
Flynn, KE; Jeffery, DD; Keefe, FJ; Porter, LS; Shelby, RA; Fawzy, MR; Gosselin, TK; Reeve, BB; Weinfurt, KP
MLA Citation
Flynn, KE, Jeffery, DD, Keefe, FJ, Porter, LS, Shelby, RA, Fawzy, MR, Gosselin, TK, Reeve, BB, and Weinfurt, KP. "Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®)." Psycho-oncology 20.4 (April 2011): 378-386.
PMID
20878833
Source
epmc
Published In
Psycho-Oncology
Volume
20
Issue
4
Publish Date
2011
Start Page
378
End Page
386
DOI
10.1002/pon.1738

Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®).

OBJECTIVE: Cancer and treatments for cancer affect specific aspects of sexual functioning and intimacy; however, limited qualitative work has been done in diverse cancer populations. As part of an effort to improve measurement of self-reported sexual functioning, we explored the scope and importance of sexual functioning and intimacy to patients across cancer sites and along the continuum of care. METHODS: We conducted 16 diagnosis- and sex-specific focus groups with patients recruited from the Duke University tumor registry and oncology/hematology clinics (N=109). A trained note taker produced field notes summarizing the discussions. An independent auditor verified field notes against written transcripts. The content of the discussions was analyzed for major themes by two independent coders. RESULTS: Across all cancers, the most commonly discussed cancer- or treatment-related effects on sexual functioning and intimacy were fatigue, treatment-related hair loss, weight gain and organ loss or scarring. Additional barriers were unique to particular diagnoses, such as shortness of breath in lung cancer, gastrointestinal problems in colorectal cancers and incontinence in prostate cancer. Sexual functioning and intimacy were considered important to quality of life. While most effects of cancer were considered negative, many participants identified improvements to intimacy after cancer. CONCLUSION: Overall evaluations of satisfaction with sex life did not always correspond to specific aspects of functioning (e.g. erectile dysfunction), presenting a challenge to researchers aiming to measure sexual functioning as an outcome. Health-care providers should not assume that level of sexual impairment determines sexual satisfaction and should explore cancer patients' sexual concerns directly.

Authors
Flynn, KE; Jeffery, DD; Keefe, FJ; Porter, LS; Shelby, RA; Fawzy, MR; Gosselin, TK; Reeve, BB; Weinfurt, KP
MLA Citation
Flynn, KE, Jeffery, DD, Keefe, FJ, Porter, LS, Shelby, RA, Fawzy, MR, Gosselin, TK, Reeve, BB, and Weinfurt, KP. "Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®)." Psycho-oncology 20.4 (April 2011): 378-386.
PMID
20878833
Source
epmc
Published In
Psycho-Oncology
Volume
20
Issue
4
Publish Date
2011
Start Page
378
End Page
386
DOI
10.1002/pon.1738

Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®).

OBJECTIVE: Cancer and treatments for cancer affect specific aspects of sexual functioning and intimacy; however, limited qualitative work has been done in diverse cancer populations. As part of an effort to improve measurement of self-reported sexual functioning, we explored the scope and importance of sexual functioning and intimacy to patients across cancer sites and along the continuum of care. METHODS: We conducted 16 diagnosis- and sex-specific focus groups with patients recruited from the Duke University tumor registry and oncology/hematology clinics (N=109). A trained note taker produced field notes summarizing the discussions. An independent auditor verified field notes against written transcripts. The content of the discussions was analyzed for major themes by two independent coders. RESULTS: Across all cancers, the most commonly discussed cancer- or treatment-related effects on sexual functioning and intimacy were fatigue, treatment-related hair loss, weight gain and organ loss or scarring. Additional barriers were unique to particular diagnoses, such as shortness of breath in lung cancer, gastrointestinal problems in colorectal cancers and incontinence in prostate cancer. Sexual functioning and intimacy were considered important to quality of life. While most effects of cancer were considered negative, many participants identified improvements to intimacy after cancer. CONCLUSION: Overall evaluations of satisfaction with sex life did not always correspond to specific aspects of functioning (e.g. erectile dysfunction), presenting a challenge to researchers aiming to measure sexual functioning as an outcome. Health-care providers should not assume that level of sexual impairment determines sexual satisfaction and should explore cancer patients' sexual concerns directly.

Authors
Flynn, KE; Jeffery, DD; Keefe, FJ; Porter, LS; Shelby, RA; Fawzy, MR; Gosselin, TK; Reeve, BB; Weinfurt, KP
MLA Citation
Flynn, KE, Jeffery, DD, Keefe, FJ, Porter, LS, Shelby, RA, Fawzy, MR, Gosselin, TK, Reeve, BB, and Weinfurt, KP. "Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®)." Psychooncology 20.4 (April 2011): 378-386.
PMID
20878833
Source
epmc
Published In
Psycho-Oncology
Volume
20
Issue
4
Publish Date
2011
Start Page
378
End Page
386
DOI
10.1002/pon.1738

Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®).

OBJECTIVE: Cancer and treatments for cancer affect specific aspects of sexual functioning and intimacy; however, limited qualitative work has been done in diverse cancer populations. As part of an effort to improve measurement of self-reported sexual functioning, we explored the scope and importance of sexual functioning and intimacy to patients across cancer sites and along the continuum of care. METHODS: We conducted 16 diagnosis- and sex-specific focus groups with patients recruited from the Duke University tumor registry and oncology/hematology clinics (N=109). A trained note taker produced field notes summarizing the discussions. An independent auditor verified field notes against written transcripts. The content of the discussions was analyzed for major themes by two independent coders. RESULTS: Across all cancers, the most commonly discussed cancer- or treatment-related effects on sexual functioning and intimacy were fatigue, treatment-related hair loss, weight gain and organ loss or scarring. Additional barriers were unique to particular diagnoses, such as shortness of breath in lung cancer, gastrointestinal problems in colorectal cancers and incontinence in prostate cancer. Sexual functioning and intimacy were considered important to quality of life. While most effects of cancer were considered negative, many participants identified improvements to intimacy after cancer. CONCLUSION: Overall evaluations of satisfaction with sex life did not always correspond to specific aspects of functioning (e.g. erectile dysfunction), presenting a challenge to researchers aiming to measure sexual functioning as an outcome. Health-care providers should not assume that level of sexual impairment determines sexual satisfaction and should explore cancer patients' sexual concerns directly.

Authors
Flynn, KE; Jeffery, DD; Keefe, FJ; Porter, LS; Shelby, RA; Fawzy, MR; Gosselin, TK; Reeve, BB; Weinfurt, KP
MLA Citation
Flynn, KE, Jeffery, DD, Keefe, FJ, Porter, LS, Shelby, RA, Fawzy, MR, Gosselin, TK, Reeve, BB, and Weinfurt, KP. "Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®)." Psychooncology 20.4 (April 2011): 378-386.
PMID
20878833
Source
epmc
Published In
Psycho-Oncology
Volume
20
Issue
4
Publish Date
2011
Start Page
378
End Page
386
DOI
10.1002/pon.1738

Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®).

OBJECTIVE: Cancer and treatments for cancer affect specific aspects of sexual functioning and intimacy; however, limited qualitative work has been done in diverse cancer populations. As part of an effort to improve measurement of self-reported sexual functioning, we explored the scope and importance of sexual functioning and intimacy to patients across cancer sites and along the continuum of care. METHODS: We conducted 16 diagnosis- and sex-specific focus groups with patients recruited from the Duke University tumor registry and oncology/hematology clinics (N=109). A trained note taker produced field notes summarizing the discussions. An independent auditor verified field notes against written transcripts. The content of the discussions was analyzed for major themes by two independent coders. RESULTS: Across all cancers, the most commonly discussed cancer- or treatment-related effects on sexual functioning and intimacy were fatigue, treatment-related hair loss, weight gain and organ loss or scarring. Additional barriers were unique to particular diagnoses, such as shortness of breath in lung cancer, gastrointestinal problems in colorectal cancers and incontinence in prostate cancer. Sexual functioning and intimacy were considered important to quality of life. While most effects of cancer were considered negative, many participants identified improvements to intimacy after cancer. CONCLUSION: Overall evaluations of satisfaction with sex life did not always correspond to specific aspects of functioning (e.g. erectile dysfunction), presenting a challenge to researchers aiming to measure sexual functioning as an outcome. Health-care providers should not assume that level of sexual impairment determines sexual satisfaction and should explore cancer patients' sexual concerns directly.

Authors
Flynn, KE; Jeffery, DD; Keefe, FJ; Porter, LS; Shelby, RA; Fawzy, MR; Gosselin, TK; Reeve, BB; Weinfurt, KP
MLA Citation
Flynn, KE, Jeffery, DD, Keefe, FJ, Porter, LS, Shelby, RA, Fawzy, MR, Gosselin, TK, Reeve, BB, and Weinfurt, KP. "Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®)." Psychooncology 20.4 (April 2011): 378-386.
PMID
20878833
Source
epmc
Published In
Psycho-Oncology
Volume
20
Issue
4
Publish Date
2011
Start Page
378
End Page
386
DOI
10.1002/pon.1738

Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®).

OBJECTIVE: Cancer and treatments for cancer affect specific aspects of sexual functioning and intimacy; however, limited qualitative work has been done in diverse cancer populations. As part of an effort to improve measurement of self-reported sexual functioning, we explored the scope and importance of sexual functioning and intimacy to patients across cancer sites and along the continuum of care. METHODS: We conducted 16 diagnosis- and sex-specific focus groups with patients recruited from the Duke University tumor registry and oncology/hematology clinics (N=109). A trained note taker produced field notes summarizing the discussions. An independent auditor verified field notes against written transcripts. The content of the discussions was analyzed for major themes by two independent coders. RESULTS: Across all cancers, the most commonly discussed cancer- or treatment-related effects on sexual functioning and intimacy were fatigue, treatment-related hair loss, weight gain and organ loss or scarring. Additional barriers were unique to particular diagnoses, such as shortness of breath in lung cancer, gastrointestinal problems in colorectal cancers and incontinence in prostate cancer. Sexual functioning and intimacy were considered important to quality of life. While most effects of cancer were considered negative, many participants identified improvements to intimacy after cancer. CONCLUSION: Overall evaluations of satisfaction with sex life did not always correspond to specific aspects of functioning (e.g. erectile dysfunction), presenting a challenge to researchers aiming to measure sexual functioning as an outcome. Health-care providers should not assume that level of sexual impairment determines sexual satisfaction and should explore cancer patients' sexual concerns directly.

Authors
Flynn, KE; Jeffery, DD; Keefe, FJ; Porter, LS; Shelby, RA; Fawzy, MR; Gosselin, TK; Reeve, BB; Weinfurt, KP
MLA Citation
Flynn, KE, Jeffery, DD, Keefe, FJ, Porter, LS, Shelby, RA, Fawzy, MR, Gosselin, TK, Reeve, BB, and Weinfurt, KP. "Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®)." Psychooncology 20.4 (April 2011): 378-386.
PMID
20878833
Source
epmc
Published In
Psycho-Oncology
Volume
20
Issue
4
Publish Date
2011
Start Page
378
End Page
386
DOI
10.1002/pon.1738

Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®).

OBJECTIVE: Cancer and treatments for cancer affect specific aspects of sexual functioning and intimacy; however, limited qualitative work has been done in diverse cancer populations. As part of an effort to improve measurement of self-reported sexual functioning, we explored the scope and importance of sexual functioning and intimacy to patients across cancer sites and along the continuum of care. METHODS: We conducted 16 diagnosis- and sex-specific focus groups with patients recruited from the Duke University tumor registry and oncology/hematology clinics (N=109). A trained note taker produced field notes summarizing the discussions. An independent auditor verified field notes against written transcripts. The content of the discussions was analyzed for major themes by two independent coders. RESULTS: Across all cancers, the most commonly discussed cancer- or treatment-related effects on sexual functioning and intimacy were fatigue, treatment-related hair loss, weight gain and organ loss or scarring. Additional barriers were unique to particular diagnoses, such as shortness of breath in lung cancer, gastrointestinal problems in colorectal cancers and incontinence in prostate cancer. Sexual functioning and intimacy were considered important to quality of life. While most effects of cancer were considered negative, many participants identified improvements to intimacy after cancer. CONCLUSION: Overall evaluations of satisfaction with sex life did not always correspond to specific aspects of functioning (e.g. erectile dysfunction), presenting a challenge to researchers aiming to measure sexual functioning as an outcome. Health-care providers should not assume that level of sexual impairment determines sexual satisfaction and should explore cancer patients' sexual concerns directly.

Authors
Flynn, KE; Jeffery, DD; Keefe, FJ; Porter, LS; Shelby, RA; Fawzy, MR; Gosselin, TK; Reeve, BB; Weinfurt, KP
MLA Citation
Flynn, KE, Jeffery, DD, Keefe, FJ, Porter, LS, Shelby, RA, Fawzy, MR, Gosselin, TK, Reeve, BB, and Weinfurt, KP. "Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®)." Psycho-oncology 20.4 (April 2011): 378-386.
PMID
20878833
Source
epmc
Published In
Psycho-Oncology
Volume
20
Issue
4
Publish Date
2011
Start Page
378
End Page
386
DOI
10.1002/pon.1738

Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®).

OBJECTIVE: Cancer and treatments for cancer affect specific aspects of sexual functioning and intimacy; however, limited qualitative work has been done in diverse cancer populations. As part of an effort to improve measurement of self-reported sexual functioning, we explored the scope and importance of sexual functioning and intimacy to patients across cancer sites and along the continuum of care. METHODS: We conducted 16 diagnosis- and sex-specific focus groups with patients recruited from the Duke University tumor registry and oncology/hematology clinics (N=109). A trained note taker produced field notes summarizing the discussions. An independent auditor verified field notes against written transcripts. The content of the discussions was analyzed for major themes by two independent coders. RESULTS: Across all cancers, the most commonly discussed cancer- or treatment-related effects on sexual functioning and intimacy were fatigue, treatment-related hair loss, weight gain and organ loss or scarring. Additional barriers were unique to particular diagnoses, such as shortness of breath in lung cancer, gastrointestinal problems in colorectal cancers and incontinence in prostate cancer. Sexual functioning and intimacy were considered important to quality of life. While most effects of cancer were considered negative, many participants identified improvements to intimacy after cancer. CONCLUSION: Overall evaluations of satisfaction with sex life did not always correspond to specific aspects of functioning (e.g. erectile dysfunction), presenting a challenge to researchers aiming to measure sexual functioning as an outcome. Health-care providers should not assume that level of sexual impairment determines sexual satisfaction and should explore cancer patients' sexual concerns directly.

Authors
Flynn, KE; Jeffery, DD; Keefe, FJ; Porter, LS; Shelby, RA; Fawzy, MR; Gosselin, TK; Reeve, BB; Weinfurt, KP
MLA Citation
Flynn, KE, Jeffery, DD, Keefe, FJ, Porter, LS, Shelby, RA, Fawzy, MR, Gosselin, TK, Reeve, BB, and Weinfurt, KP. "Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®)." Psycho-oncology 20.4 (April 2011): 378-386.
PMID
20878833
Source
epmc
Published In
Psycho-Oncology
Volume
20
Issue
4
Publish Date
2011
Start Page
378
End Page
386
DOI
10.1002/pon.1738

Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®).

OBJECTIVE: Cancer and treatments for cancer affect specific aspects of sexual functioning and intimacy; however, limited qualitative work has been done in diverse cancer populations. As part of an effort to improve measurement of self-reported sexual functioning, we explored the scope and importance of sexual functioning and intimacy to patients across cancer sites and along the continuum of care. METHODS: We conducted 16 diagnosis- and sex-specific focus groups with patients recruited from the Duke University tumor registry and oncology/hematology clinics (N=109). A trained note taker produced field notes summarizing the discussions. An independent auditor verified field notes against written transcripts. The content of the discussions was analyzed for major themes by two independent coders. RESULTS: Across all cancers, the most commonly discussed cancer- or treatment-related effects on sexual functioning and intimacy were fatigue, treatment-related hair loss, weight gain and organ loss or scarring. Additional barriers were unique to particular diagnoses, such as shortness of breath in lung cancer, gastrointestinal problems in colorectal cancers and incontinence in prostate cancer. Sexual functioning and intimacy were considered important to quality of life. While most effects of cancer were considered negative, many participants identified improvements to intimacy after cancer. CONCLUSION: Overall evaluations of satisfaction with sex life did not always correspond to specific aspects of functioning (e.g. erectile dysfunction), presenting a challenge to researchers aiming to measure sexual functioning as an outcome. Health-care providers should not assume that level of sexual impairment determines sexual satisfaction and should explore cancer patients' sexual concerns directly.

Authors
Flynn, KE; Jeffery, DD; Keefe, FJ; Porter, LS; Shelby, RA; Fawzy, MR; Gosselin, TK; Reeve, BB; Weinfurt, KP
MLA Citation
Flynn, KE, Jeffery, DD, Keefe, FJ, Porter, LS, Shelby, RA, Fawzy, MR, Gosselin, TK, Reeve, BB, and Weinfurt, KP. "Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®)." Psycho-oncology 20.4 (April 2011): 378-386.
PMID
20878833
Source
epmc
Published In
Psycho-Oncology
Volume
20
Issue
4
Publish Date
2011
Start Page
378
End Page
386
DOI
10.1002/pon.1738

Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®).

OBJECTIVE: Cancer and treatments for cancer affect specific aspects of sexual functioning and intimacy; however, limited qualitative work has been done in diverse cancer populations. As part of an effort to improve measurement of self-reported sexual functioning, we explored the scope and importance of sexual functioning and intimacy to patients across cancer sites and along the continuum of care. METHODS: We conducted 16 diagnosis- and sex-specific focus groups with patients recruited from the Duke University tumor registry and oncology/hematology clinics (N=109). A trained note taker produced field notes summarizing the discussions. An independent auditor verified field notes against written transcripts. The content of the discussions was analyzed for major themes by two independent coders. RESULTS: Across all cancers, the most commonly discussed cancer- or treatment-related effects on sexual functioning and intimacy were fatigue, treatment-related hair loss, weight gain and organ loss or scarring. Additional barriers were unique to particular diagnoses, such as shortness of breath in lung cancer, gastrointestinal problems in colorectal cancers and incontinence in prostate cancer. Sexual functioning and intimacy were considered important to quality of life. While most effects of cancer were considered negative, many participants identified improvements to intimacy after cancer. CONCLUSION: Overall evaluations of satisfaction with sex life did not always correspond to specific aspects of functioning (e.g. erectile dysfunction), presenting a challenge to researchers aiming to measure sexual functioning as an outcome. Health-care providers should not assume that level of sexual impairment determines sexual satisfaction and should explore cancer patients' sexual concerns directly.

Authors
Flynn, KE; Jeffery, DD; Keefe, FJ; Porter, LS; Shelby, RA; Fawzy, MR; Gosselin, TK; Reeve, BB; Weinfurt, KP
MLA Citation
Flynn, KE, Jeffery, DD, Keefe, FJ, Porter, LS, Shelby, RA, Fawzy, MR, Gosselin, TK, Reeve, BB, and Weinfurt, KP. "Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®)." Psycho-oncology 20.4 (April 2011): 378-386.
PMID
20878833
Source
epmc
Published In
Psycho-Oncology
Volume
20
Issue
4
Publish Date
2011
Start Page
378
End Page
386
DOI
10.1002/pon.1738

Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®).

OBJECTIVE: Cancer and treatments for cancer affect specific aspects of sexual functioning and intimacy; however, limited qualitative work has been done in diverse cancer populations. As part of an effort to improve measurement of self-reported sexual functioning, we explored the scope and importance of sexual functioning and intimacy to patients across cancer sites and along the continuum of care. METHODS: We conducted 16 diagnosis- and sex-specific focus groups with patients recruited from the Duke University tumor registry and oncology/hematology clinics (N=109). A trained note taker produced field notes summarizing the discussions. An independent auditor verified field notes against written transcripts. The content of the discussions was analyzed for major themes by two independent coders. RESULTS: Across all cancers, the most commonly discussed cancer- or treatment-related effects on sexual functioning and intimacy were fatigue, treatment-related hair loss, weight gain and organ loss or scarring. Additional barriers were unique to particular diagnoses, such as shortness of breath in lung cancer, gastrointestinal problems in colorectal cancers and incontinence in prostate cancer. Sexual functioning and intimacy were considered important to quality of life. While most effects of cancer were considered negative, many participants identified improvements to intimacy after cancer. CONCLUSION: Overall evaluations of satisfaction with sex life did not always correspond to specific aspects of functioning (e.g. erectile dysfunction), presenting a challenge to researchers aiming to measure sexual functioning as an outcome. Health-care providers should not assume that level of sexual impairment determines sexual satisfaction and should explore cancer patients' sexual concerns directly.

Authors
Flynn, KE; Jeffery, DD; Keefe, FJ; Porter, LS; Shelby, RA; Fawzy, MR; Gosselin, TK; Reeve, BB; Weinfurt, KP
MLA Citation
Flynn, KE, Jeffery, DD, Keefe, FJ, Porter, LS, Shelby, RA, Fawzy, MR, Gosselin, TK, Reeve, BB, and Weinfurt, KP. "Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®)." Psychooncology 20.4 (April 2011): 378-386.
PMID
20878833
Source
epmc
Published In
Psycho-Oncology
Volume
20
Issue
4
Publish Date
2011
Start Page
378
End Page
386
DOI
10.1002/pon.1738

Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®).

OBJECTIVE: Cancer and treatments for cancer affect specific aspects of sexual functioning and intimacy; however, limited qualitative work has been done in diverse cancer populations. As part of an effort to improve measurement of self-reported sexual functioning, we explored the scope and importance of sexual functioning and intimacy to patients across cancer sites and along the continuum of care. METHODS: We conducted 16 diagnosis- and sex-specific focus groups with patients recruited from the Duke University tumor registry and oncology/hematology clinics (N=109). A trained note taker produced field notes summarizing the discussions. An independent auditor verified field notes against written transcripts. The content of the discussions was analyzed for major themes by two independent coders. RESULTS: Across all cancers, the most commonly discussed cancer- or treatment-related effects on sexual functioning and intimacy were fatigue, treatment-related hair loss, weight gain and organ loss or scarring. Additional barriers were unique to particular diagnoses, such as shortness of breath in lung cancer, gastrointestinal problems in colorectal cancers and incontinence in prostate cancer. Sexual functioning and intimacy were considered important to quality of life. While most effects of cancer were considered negative, many participants identified improvements to intimacy after cancer. CONCLUSION: Overall evaluations of satisfaction with sex life did not always correspond to specific aspects of functioning (e.g. erectile dysfunction), presenting a challenge to researchers aiming to measure sexual functioning as an outcome. Health-care providers should not assume that level of sexual impairment determines sexual satisfaction and should explore cancer patients' sexual concerns directly.

Authors
Flynn, KE; Jeffery, DD; Keefe, FJ; Porter, LS; Shelby, RA; Fawzy, MR; Gosselin, TK; Reeve, BB; Weinfurt, KP
MLA Citation
Flynn, KE, Jeffery, DD, Keefe, FJ, Porter, LS, Shelby, RA, Fawzy, MR, Gosselin, TK, Reeve, BB, and Weinfurt, KP. "Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®)." Psychooncology 20.4 (April 2011): 378-386.
PMID
20878833
Source
epmc
Published In
Psycho-Oncology
Volume
20
Issue
4
Publish Date
2011
Start Page
378
End Page
386
DOI
10.1002/pon.1738

Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®).

OBJECTIVE: Cancer and treatments for cancer affect specific aspects of sexual functioning and intimacy; however, limited qualitative work has been done in diverse cancer populations. As part of an effort to improve measurement of self-reported sexual functioning, we explored the scope and importance of sexual functioning and intimacy to patients across cancer sites and along the continuum of care. METHODS: We conducted 16 diagnosis- and sex-specific focus groups with patients recruited from the Duke University tumor registry and oncology/hematology clinics (N=109). A trained note taker produced field notes summarizing the discussions. An independent auditor verified field notes against written transcripts. The content of the discussions was analyzed for major themes by two independent coders. RESULTS: Across all cancers, the most commonly discussed cancer- or treatment-related effects on sexual functioning and intimacy were fatigue, treatment-related hair loss, weight gain and organ loss or scarring. Additional barriers were unique to particular diagnoses, such as shortness of breath in lung cancer, gastrointestinal problems in colorectal cancers and incontinence in prostate cancer. Sexual functioning and intimacy were considered important to quality of life. While most effects of cancer were considered negative, many participants identified improvements to intimacy after cancer. CONCLUSION: Overall evaluations of satisfaction with sex life did not always correspond to specific aspects of functioning (e.g. erectile dysfunction), presenting a challenge to researchers aiming to measure sexual functioning as an outcome. Health-care providers should not assume that level of sexual impairment determines sexual satisfaction and should explore cancer patients' sexual concerns directly.

Authors
Flynn, KE; Jeffery, DD; Keefe, FJ; Porter, LS; Shelby, RA; Fawzy, MR; Gosselin, TK; Reeve, BB; Weinfurt, KP
MLA Citation
Flynn, KE, Jeffery, DD, Keefe, FJ, Porter, LS, Shelby, RA, Fawzy, MR, Gosselin, TK, Reeve, BB, and Weinfurt, KP. "Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®)." Psychooncology 20.4 (April 2011): 378-386.
PMID
20878833
Source
epmc
Published In
Psycho-Oncology
Volume
20
Issue
4
Publish Date
2011
Start Page
378
End Page
386
DOI
10.1002/pon.1738

Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®).

OBJECTIVE: Cancer and treatments for cancer affect specific aspects of sexual functioning and intimacy; however, limited qualitative work has been done in diverse cancer populations. As part of an effort to improve measurement of self-reported sexual functioning, we explored the scope and importance of sexual functioning and intimacy to patients across cancer sites and along the continuum of care. METHODS: We conducted 16 diagnosis- and sex-specific focus groups with patients recruited from the Duke University tumor registry and oncology/hematology clinics (N=109). A trained note taker produced field notes summarizing the discussions. An independent auditor verified field notes against written transcripts. The content of the discussions was analyzed for major themes by two independent coders. RESULTS: Across all cancers, the most commonly discussed cancer- or treatment-related effects on sexual functioning and intimacy were fatigue, treatment-related hair loss, weight gain and organ loss or scarring. Additional barriers were unique to particular diagnoses, such as shortness of breath in lung cancer, gastrointestinal problems in colorectal cancers and incontinence in prostate cancer. Sexual functioning and intimacy were considered important to quality of life. While most effects of cancer were considered negative, many participants identified improvements to intimacy after cancer. CONCLUSION: Overall evaluations of satisfaction with sex life did not always correspond to specific aspects of functioning (e.g. erectile dysfunction), presenting a challenge to researchers aiming to measure sexual functioning as an outcome. Health-care providers should not assume that level of sexual impairment determines sexual satisfaction and should explore cancer patients' sexual concerns directly.

Authors
Flynn, KE; Jeffery, DD; Keefe, FJ; Porter, LS; Shelby, RA; Fawzy, MR; Gosselin, TK; Reeve, BB; Weinfurt, KP
MLA Citation
Flynn, KE, Jeffery, DD, Keefe, FJ, Porter, LS, Shelby, RA, Fawzy, MR, Gosselin, TK, Reeve, BB, and Weinfurt, KP. "Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®)." Psychooncology 20.4 (April 2011): 378-386.
PMID
20878833
Source
epmc
Published In
Psycho-Oncology
Volume
20
Issue
4
Publish Date
2011
Start Page
378
End Page
386
DOI
10.1002/pon.1738

Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®).

OBJECTIVE: Cancer and treatments for cancer affect specific aspects of sexual functioning and intimacy; however, limited qualitative work has been done in diverse cancer populations. As part of an effort to improve measurement of self-reported sexual functioning, we explored the scope and importance of sexual functioning and intimacy to patients across cancer sites and along the continuum of care. METHODS: We conducted 16 diagnosis- and sex-specific focus groups with patients recruited from the Duke University tumor registry and oncology/hematology clinics (N=109). A trained note taker produced field notes summarizing the discus