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Smith, Sophia Kustas

Overview:

Dr. Sophia Smith came to the Duke University School of Nursing faculty from the Duke Clinical Research Institute, where she was a Research Scientist in the Cancer Care Research Program (DCCRP) and Center of Learning Health Care (CLHC). Dr. Smith earned her PhD and MSW degrees at the University of North Carolina School of Social Work. Her clinical background includes social work internships at the Duke Comprehensive Cancer Center in Pediatric Hematology/Oncology and the Hospice of Alamance County. Dr. Smith earned a BS degree (in business administration with an information systems concentration) at State University of New York at Albany, and was a senior manager at IBM and led an organization of computer application programmers and systems analysts before beginning her career in oncology social work.

Dr. Smith’s program of research has focused on innovative mHealth and psychosocial care solutions to improve health outcomes for cancer survivors. Her work has helped to define the longitudinal quality of life and patient experience of survivors of adult non-Hodgkin lymphoma, with a particular focus on posttraumatic stress disorder, the impact of cancer, and implementation of evidence-based supportive care services. As a senior scientist member of DCCRP, CLHC, and the Duke Oncology Nursing Center of Excellence, Dr. Smith has also contributed to a research ecosystem that conducts patient-centered clinical trials, analyses and policy studies, all of which simultaneously utilize and further the development of an integrated data system. This system coordinates diverse datasets, leverages novel information technology for patient-reporting of symptoms and other concerns, informs future studies, and facilitates patient education and patient-provider communication.

Positions:

Associate Professor in the School of Nursing

School of Nursing
School of Nursing

Member 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:

M.S.W. 2001

M.S.W. — University of North Carolina at Chapel Hill

Ph.D. 2007

Ph.D. — University of North Carolina at Chapel Hill

News:

Grants:

Patient-centered home-based hematopoietic stem cell transplantation

Administered By
Medicine, Hematologic Malignancies and Cellular Therapy
AwardedBy
National Institutes of Health
Role
Co Investigator
Start Date
May 01, 2016
End Date
April 30, 2021

Reimagine End of Life: An Online, Personalized Coping and Decision Aid for Metastatic Breast Cancer Patients and Providers

Administered By
School of Nursing
AwardedBy
Pfizer, Inc.
Role
Principal Investigator
Start Date
July 21, 2016
End Date
July 21, 2018

Publications:

Identifying Social-Behavioral Health Needs of Adults with Sickle Cell Disease in the Emergency Department.

Sickle cell disease (SCD) is a complex illness with many social-behavioral co-morbidities. The aim of this project was to describe unmet social-behavioral health needs for adults with SCD who presented to the emergency department for treatment of vaso-occlusive episodes (VOEs).A descriptive study using 1:1 interviews during an ED visit for a VOE was conducted; a brief social behavioral health screening interview guide was used. A convenience sample of adults with SCD treated in the emergency department for a VOE were eligible for inclusion.We conducted 147 interviews over 14 months. Patients reported transportation and/or scheduling difficulties with clinic appointments in one third of the interviews. Four major themes emerged: clinic appointment barriers, medication barriers, other care barriers, and social-behavioral issues. A majority of patients (53%) reported being brought to the emergency department by a family member at their current visit. Patients cited having insurance coverage issues in more than one quarter (27%) of the interviews. Difficulties in obtaining prescriptions were cited as a result of a financial copay (17%), transportation (11%), and pharmacy (9%) issues. Almost one third of patients (29%) reported feeling depressed, and 20% reported feeling anxious.Many patients with SCD who are treated in the emergency department have social or behavioral health risk factors. Emergency departments have an opportunity to screen and refer patients for follow-up. Future research should investigate referral outcomes and their effect on ED and hospital use.

Authors
Smith, SK; Johnston, J; Rutherford, C; Hollowell, R; Tanabe, P
MLA Citation
Smith, SK, Johnston, J, Rutherford, C, Hollowell, R, and Tanabe, P. "Identifying Social-Behavioral Health Needs of Adults with Sickle Cell Disease in the Emergency Department." Journal of emergency nursing: JEN : official publication of the Emergency Department Nurses Association 43.5 (September 2017): 444-450.
PMID
28527641
Source
epmc
Published In
Journal of Emergency Nursing
Volume
43
Issue
5
Publish Date
2017
Start Page
444
End Page
450
DOI
10.1016/j.jen.2017.04.009

Survivorship, Version 2.2017, NCCN Clinical Practice Guidelines in Oncology.

Many cancer survivors experience menopausal symptoms, including female survivors taking aromatase inhibitors or with a history of oophorectomy or chemotherapy, and male survivors who received or are receiving androgen-ablative therapies. Sexual dysfunction is also common in cancer survivors. Sexual dysfunction and menopause-related symptoms can increase distress and have a significant negative impact on quality of life. This portion of the NCCN Guidelines for Survivorship provide recommendations for screening, evaluation, and treatment of sexual dysfunction and menopausal symptoms to help healthcare professionals who work with survivors of adult-onset cancer in the posttreatment period.

Authors
Denlinger, CS; Sanft, T; Baker, KS; Baxi, S; Broderick, G; Demark-Wahnefried, W; Friedman, DL; Goldman, M; Hudson, M; Khakpour, N; King, A; Koura, D; Kvale, E; Lally, RM; Langbaum, TS; Melisko, M; Montoya, JG; Mooney, K; Moslehi, JJ; O'Connor, T; Overholser, L; Paskett, ED; Peppercorn, J; Rodriguez, MA; Ruddy, KJ; Silverman, P; Smith, S; Syrjala, KL; Tevaarwerk, A; Urba, SG; Wakabayashi, MT; Zee, P; Freedman-Cass, DA; McMillian, NR
MLA Citation
Denlinger, CS, Sanft, T, Baker, KS, Baxi, S, Broderick, G, Demark-Wahnefried, W, Friedman, DL, Goldman, M, Hudson, M, Khakpour, N, King, A, Koura, D, Kvale, E, Lally, RM, Langbaum, TS, Melisko, M, Montoya, JG, Mooney, K, Moslehi, JJ, O'Connor, T, Overholser, L, Paskett, ED, Peppercorn, J, Rodriguez, MA, Ruddy, KJ, Silverman, P, Smith, S, Syrjala, KL, Tevaarwerk, A, Urba, SG, Wakabayashi, MT, Zee, P, Freedman-Cass, DA, and McMillian, NR. "Survivorship, Version 2.2017, NCCN Clinical Practice Guidelines in Oncology." Journal of the National Comprehensive Cancer Network : JNCCN 15.9 (September 2017): 1140-1163.
PMID
28874599
Source
epmc
Published In
Journal of the National Comprehensive Cancer Network : JNCCN
Volume
15
Issue
9
Publish Date
2017
Start Page
1140
End Page
1163
DOI
10.6004/jnccn.2017.0146

Comparison of the impact of cancer between British and US long-term non-Hodgkin lymphoma survivors.

The aims of this study were to examine quality of life, using the Impact of Cancer version 2 (IOCv2), in British non-Hodgkin lymphoma (NHL) survivors and investigate differences between survivors in the UK and the USA.NHL survivors (326 UK and 667 US) completed the 37-item IOCv2 and psychological distress, fatigue and social support questionnaires.The IOCv2 showed good reliability in the British sample with higher internal consistency (Cronbach alpha 0.7-0.9) and no floor and ceiling effects. UK survivors showed significantly higher negative (p < 0.001) and higher positive (p = 0.003) IOC compared to US survivors. Younger survivors (p = 0.003), those with shorter time since diagnosis (p < 0.001) and with lower levels of social support (p = 0.001), showed more negative IOC in both groups. Higher negative IOC was also significantly associated with fatigue (p < 0.001) and depressive symptoms (p < 0.001) in both countries. Higher positive IOC was associated with female gender (p < 0.001), longer time since diagnosis (p = 0.02), those diagnosed at later stage (p < 0.05) and with greater social support (p = 0.004). Whereas significantly lower positive IOC was associated with white ethnicity (p < 0.001), higher education levels (p < 0.05) and fatigue (p = 0.001).The IOCv2 is reliable and applicable in UK and US populations. Both negative and positive IOC scores were higher in British compared to US survivors. However, in both countries, psychosocial factors consistently showed the greatest impact on QOL irrespective of clinical characteristics. Recognition and treatment of individuals with these risk factors is a high priority for improving QOL in long-term cancer survivors, as is the development of modular interventions aimed at increasing positive IOC as well as decreasing negative impact. The IOCv2 shows great potential both as a screening and assessment measure for examining cancer-related outcomes among survivors.

Authors
Sarker, S-J; Smith, SK; Chowdhury, K; Ganz, PA; Zimmerman, S; Gribben, J; Korszun, A
MLA Citation
Sarker, S-J, Smith, SK, Chowdhury, K, Ganz, PA, Zimmerman, S, Gribben, J, and Korszun, A. "Comparison of the impact of cancer between British and US long-term non-Hodgkin lymphoma survivors." Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer 25.3 (March 2017): 739-748.
PMID
27826873
Source
epmc
Published In
Supportive Care in Cancer
Volume
25
Issue
3
Publish Date
2017
Start Page
739
End Page
748
DOI
10.1007/s00520-016-3454-1

Cancer distress coach: Pilot study of a mobile app for managing posttraumatic stress.

Authors
Smith, SK; Kuhn, E; O'Donnell, J; Koontz, BF; Nelson, N; Molloy, K; Chang, J; Hoffman, J
MLA Citation
Smith, SK, Kuhn, E, O'Donnell, J, Koontz, BF, Nelson, N, Molloy, K, Chang, J, and Hoffman, J. "Cancer distress coach: Pilot study of a mobile app for managing posttraumatic stress." Psycho-oncology (December 29, 2016).
PMID
28032921
Source
epmc
Published In
Psycho-Oncology
Publish Date
2016
DOI
10.1002/pon.4363

Quality of Life is Similar between Long-term Survivors of Indolent and Aggressive Non-Hodgkin Lymphoma.

Differences in quality of life (QOL) of long-term survivors of aggressive or indolent subtypes of non-Hodgkin lymphoma (NHL) have not been frequently evaluated. We assessed these differences by analyzing results of a large QOL survey of long-term NHL survivors. We hypothesized that the incurable nature of indolent NHL would relate to worse QOL in long-term survivors while the potentially cured long-term survivors of aggressive lymphoma would have better QOL. We found that QOL was similar between the two groups. Results suggest that patients with indolent NHL are coping well with their disease, yet experience some overall feelings of life threat.

Authors
Beaven, AW; Samsa, G; Zimmerman, S; Smith, SK
MLA Citation
Beaven, AW, Samsa, G, Zimmerman, S, and Smith, SK. "Quality of Life is Similar between Long-term Survivors of Indolent and Aggressive Non-Hodgkin Lymphoma." Cancer investigation 34.6 (July 5, 2016): 279-285.
PMID
27379565
Source
epmc
Published In
Cancer Investigation (Informa)
Volume
34
Issue
6
Publish Date
2016
Start Page
279
End Page
285
DOI
10.1080/07357907.2016.1194427

NCCN guidelines®insights survivorship, version 1.2016 featured updates to the NCCN Guidelines

© JNCCN-Journal of the National Comprehensive Cancer Network. The NCCN Guidelines for Survivorship provide screening, evaluation, and treatment recommendations for common consequences of cancer and cancer treatment. They are intended to aid health care professionals who work with survivors of adult-onset cancer in the posttreatment period, including those in general oncology, specialty cancer survivor clinics, and primary care practices. Guidance is also provided to help promote physical activity, weight management, and proper immunizations in survivors. This article summarizes the NCCN Survivorship panel's discussions for the 2016 update of the guidelines regarding the management of anxiety, depression, posttraumatic stress disorder-related symptoms, and emotional distress in survivors.

Authors
Denlinger, CS; Ligibel, JA; Are, M; Baker, KS; Broderick, G; Demark-Wahnefried, W; Friedman, DL; Goldman, M; Jones, LW; King, A; Ku, GH; Kvale, E; Langbaum, TS; McCabe, MS; Melisko, M; Montoya, JG; Mooney, K; Morgan, MA; Moslehi, JJ; O'connor, T; Overholser, L; Paskett, ED; Peppercorn, J; Rodriguez, MA; Ruddy, KJ; Sanft, T; Silverman, P; Smith, S; Syrjala, KL; Urba, SG; Wakabayashi, MT; Zee, P; McMillian, NR; Freedman-Cass, DA
MLA Citation
Denlinger, CS, Ligibel, JA, Are, M, Baker, KS, Broderick, G, Demark-Wahnefried, W, Friedman, DL, Goldman, M, Jones, LW, King, A, Ku, GH, Kvale, E, Langbaum, TS, McCabe, MS, Melisko, M, Montoya, JG, Mooney, K, Morgan, MA, Moslehi, JJ, O'connor, T, Overholser, L, Paskett, ED, Peppercorn, J, Rodriguez, MA, Ruddy, KJ, Sanft, T, Silverman, P, Smith, S, Syrjala, KL, Urba, SG, Wakabayashi, MT, Zee, P, McMillian, NR, and Freedman-Cass, DA. "NCCN guidelines®insights survivorship, version 1.2016 featured updates to the NCCN Guidelines." JNCCN Journal of the National Comprehensive Cancer Network 14.6 (June 1, 2016): 715-724.
Source
scopus
Published In
Journal of the National Comprehensive Cancer Network : JNCCN
Volume
14
Issue
6
Publish Date
2016
Start Page
715
End Page
724

Evaluation of Pillars4life: a virtual coping skills program for cancer survivors.

Pillars4Life is an educational program that teaches coping skills to cancer patients in a virtual group setting; it was recently implemented at 17 hospitals across the USA. The cost-effective, scalable, and assessable Pillars4Life curriculum targets psychosocial resources (e.g., self-efficacy and coping skills) as a means to reduce symptoms (e.g., depression, anxiety, and posttraumatic stress) and enhance quality of life.Cancer patients were recruited from hospitals that received the LIVESTRONG Community Impact Project Award to enroll in a pilot study of Pillars4Life. Consenting participants met with a certified instructor weekly for 10 weeks in a virtual environment; the manualized intervention trained participants in personal coping skills. Longitudinal assessments over 6 months were assessed using validated instruments to determine changes in Pillars4Life targeted resources and outcomes. Multiple linear regression models examined the relationship between changes in targeted resources and changes in outcome from baseline to 3 months post-intervention.Participants (n = 130) had the following characteristics: mean age of 56 ± 11 years, 87% women, 11% non-Caucasian, and 77% with college degree. At 3- and 6-month follow-up, mean scores improved on all key outcome measures such as depression (Patient Health Questionnaire), anxiety (Generalized Anxiety Disorder), posttraumatic stress (Posttraumatic Stress Disorder Checklist), fatigue (Functional Assessment of Chronic Illness Therapy-Fatigue), and well-being (Functional Assessment of Cancer Therapy-General) from baseline (all p < 0.01); results were most pronounced among participants who reported ≥4/10 on the Distress Thermometer at baseline (all p < 0.001). Changes in each targeted resource were associated with 3-month improvements in at least one outcome.Participation in the Pillars4Life program was associated with statistically and clinically significant improvements in scores on pre-specified outcomes and targeted resources.

Authors
Smith, SK; O'Donnell, JD; Abernethy, AP; MacDermott, K; Staley, T; Samsa, GP
MLA Citation
Smith, SK, O'Donnell, JD, Abernethy, AP, MacDermott, K, Staley, T, and Samsa, GP. "Evaluation of Pillars4life: a virtual coping skills program for cancer survivors." Psycho-oncology 24.11 (November 2015): 1407-1415.
PMID
25644773
Source
epmc
Published In
Psycho-Oncology
Volume
24
Issue
11
Publish Date
2015
Start Page
1407
End Page
1415
DOI
10.1002/pon.3750

Are lifestyle behavioral factors associated with health-related quality of life in long-term survivors of non-Hodgkin lymphoma?

The objective of the current study was to determine whether survivors of non-Hodgkin lymphoma are meeting select American Cancer Society (ACS) health-related guidelines for cancer survivors, as well as to examine relationships between these lifestyle factors and health-related quality of life (HRQoL) and posttraumatic stress (PTS).A cross-sectional sample of 566 survivors of NHL was identified from the tumor registries of 2 large academic medical centers. Respondents were surveyed regarding physical activity, fruit and vegetable intake, body weight, tobacco use, HRQoL using the Medical Outcomes Study Short Form-36, and PTS using the Posttraumatic Stress Disorder CheckList-Civilian form. Lifestyle cluster scores were generated based on whether individuals met health guidelines and multiple linear regression analysis was used to evaluate relationships between lifestyle behaviors and HRQoL scores and PTS scores.Approximately 11% of participants met all 4 ACS health recommendations. Meeting all 4 healthy recommendations was related to better physical and mental QoL (standardized regression coefficient [β], .57 [P<.0001] and β, .47 [P = .002]) and to lower PTS scores (β, -0.41; P = .01).Survivors of NHL who met more ACS health-related guidelines appeared to have better HRQoL and less PTS. Unfortunately, many survivors are not meeting these guidelines, which could impact their overall well-being and longevity.

Authors
Spector, DJ; Noonan, D; Mayer, DK; Benecha, H; Zimmerman, S; Smith, SK
MLA Citation
Spector, DJ, Noonan, D, Mayer, DK, Benecha, H, Zimmerman, S, and Smith, SK. "Are lifestyle behavioral factors associated with health-related quality of life in long-term survivors of non-Hodgkin lymphoma?." Cancer 121.18 (September 2015): 3343-3351.
PMID
26036473
Source
epmc
Published In
Cancer
Volume
121
Issue
18
Publish Date
2015
Start Page
3343
End Page
3351
DOI
10.1002/cncr.29490

An exploratory path model of the relationships between positive and negative adaptation to cancer on quality of life among non-Hodgkin lymphoma survivors.

Adaptation is an ongoing, cognitive process with continuous appraisal of the cancer experience by the survivor. This exploratory study tested a path model examining the personal (demographic, disease, and psychosocial) characteristics associated with quality of life (QOL) and whether or not adaptation to living with cancer may mediate these effects. This study employed path analysis to estimate adaptation to cancer. A cross-sectional sample of NHL survivors (N = 750) was used to test the model. Eligible participants were ≥ 18 years, at least 2 years post-diagnosis, and living with or without active disease. Sixty-eight percent of the variance was accounted for in QOL. The strongest effect (-0.596) was direct by negative adaptation, approximately 3 times that of positive adaptation (0.193). The strongest demographic total effects on QOL were age and social support; <65 years of age had better QOL and better adaptation compared to those ≥ 65. Of the disease characteristics, comorbidity score had the strongest direct effect on QOL; each additional comorbidity was associated with a 0.309 standard deviation decline on QOL. There were no fully mediated effects through positive adaptation alone. Our exploratory findings support the coexistence of positive and negative adaptations perception as mediators of personal characteristics of the cancer experience. Negative adaptation can affect QOL in a positive way. Cancer survivorship is simultaneously shaped by both positive and negative adaptation with future research and implications for practice aimed at improving QOL.

Authors
Bryant, AL; Smith, SK; Zimmer, C; Crandell, J; Jenerette, CM; Bailey, DE; Zimmerman, S; Mayer, DK
MLA Citation
Bryant, AL, Smith, SK, Zimmer, C, Crandell, J, Jenerette, CM, Bailey, DE, Zimmerman, S, and Mayer, DK. "An exploratory path model of the relationships between positive and negative adaptation to cancer on quality of life among non-Hodgkin lymphoma survivors." Journal of psychosocial oncology 33.3 (May 2015): 310-331.
PMID
25751114
Source
epmc
Published In
Journal of Psychosocial Oncology
Volume
33
Issue
3
Publish Date
2015
Start Page
310
End Page
331
DOI
10.1080/07347332.2015.1020978

Patient Engagement Practices in Clinical Research among Patient Groups, Industry, and Academia in the United States: A Survey.

Patient-centered clinical trial design and execution is becoming increasingly important. No best practice guidelines exist despite a key stakeholder declaration to create more effective engagement models. This study aims to gain a better understanding of attitudes and practices for engaging patient groups so that actionable recommendations may be developed.Individuals from industry, academic institutions, and patient groups were identified through Clinical Trials Transformation Initiative and Drug Information Association rosters and mailing lists. Objectives, practices, and perceived barriers related to engaging patient groups in the planning, conduct, and interpretation of clinical trials were reported in an online survey. Descriptive and inferential statistical analysis of survey data followed a literature review to inform survey questions.Survey respondents (n = 179) valued the importance of involving patient groups in research; however, patient group respondents valued their contributions to research protocol development, funding acquisition, and interpretation of study results more highly than those contributions were valued by industry and academic respondents (all p < .001). Patient group respondents placed higher value in open communications, clear expectations, and detailed contract execution than did non-patient group respondents (all p < .05). Industry and academic respondents more often cited internal bureaucratic processes and reluctance to share information as engagement barriers than did patient group respondents (all p < .01). Patient groups reported that a lack of transparency and understanding of the benefits of collaboration on the part of industry and academia were greater barriers than did non-patient group respondents (all p< .01).Despite reported similarities among approaches to engagement by the three stakeholder groups, key differences exist in perceived barriers and benefits to partnering with patient groups among the sectors studied. This recognition could inform the development of best practices for patient-centered clinical trial design and execution. Additional research is needed to define and optimize key success factors.

Authors
Smith, SK; Selig, W; Harker, M; Roberts, JN; Hesterlee, S; Leventhal, D; Klein, R; Patrick-Lake, B; Abernethy, AP
MLA Citation
Smith, SK, Selig, W, Harker, M, Roberts, JN, Hesterlee, S, Leventhal, D, Klein, R, Patrick-Lake, B, and Abernethy, AP. "Patient Engagement Practices in Clinical Research among Patient Groups, Industry, and Academia in the United States: A Survey." PLoS ONE 10.10 (January 2015): e0140232-.
PMID
26465328
Source
epmc
Published In
PloS one
Volume
10
Issue
10
Publish Date
2015
Start Page
e0140232
DOI
10.1371/journal.pone.0140232

Bridging the gap between financial distress and available resources for patients with cancer: a qualitative study.

Cancer treatment-related out-of-pocket costs create substantial financial distress for many patients. However, little work has been done to describe available financial resources and barriers to connecting those resources to patients.This was a single-center, qualitative study that used semistructured interviews and focus groups with social workers and financial care counselors. Interview guides were used to elicit feedback from study participants pertaining to the types of financial problems that their patients were experiencing, the process for addressing these issues, patient assistance resources, and access barriers.Four interviews and two focus group sessions (n = 15) were conducted in which four themes emerged among the social work and financial care counselor samples. Participants cited (1) frustration over the lack of financial resources and increasingly stringent eligibility criteria, (2) barriers to providing assistance such as process inefficiencies, (3) limited resources to identify at- risk patients and refer them for services, and (4) inadequate insurance coverage and availability. To bridge the gap between increasing patient need and limited resources, participants suggested development of interventions designed to aid in patient screening and resource identification.Oncology social workers and financial care counselors reported inadequate financial resources and faced barriers to matching appropriate resources with patients in need. Limited social work resources hindered early screening for financial distress. Interventions that focus on screening for early identification of financial distress and identification of resources are needed.

Authors
Smith, SK; Nicolla, J; Zafar, SY
MLA Citation
Smith, SK, Nicolla, J, and Zafar, SY. "Bridging the gap between financial distress and available resources for patients with cancer: a qualitative study." Journal of oncology practice 10.5 (September 2014): e368-e372.
PMID
24865219
Source
epmc
Published In
Journal of Oncology Practice
Volume
10
Issue
5
Publish Date
2014
Start Page
e368
End Page
e372
DOI
10.1200/jop.2013.001342

Is there a relationship between posttraumatic stress and growth after a lymphoma diagnosis?

There are conflicting empirical data regarding the relationship between posttraumatic stress (PTS) and growth (PTG) observed in cancer survivors. Clarification of this association could inform evidence-based therapeutic recommendations to promote adjustment in survivors following a cancer diagnosis.This cross-sectional study employed standardized measures to examine the association between PTS and PTG in a sample of long-term lymphoma survivors. In addition, associations between PTG and demographic, clinical and psychosocial variables were identified to inform clinical recommendations.Long-term survivors of non-Hodgkin lymphoma provided informed consent (n = 886; 74% response rate). Subjects averaged 10.2 years post-diagnosis and 62.9 years of age. No significant association was found between the PTS and PTG summary scores. Several demographic and clinical variables (e.g., female gender and greater social support) were independently associated with greater PTG.Clinicians are advised to be attentive to psychosocial needs throughout the post-cancer diagnosis adjustment period by screening for PTS symptomatology and recognizing that survivors who report growth may also be highly distressed.

Authors
Smith, SK; Samsa, G; Ganz, PA; Zimmerman, S
MLA Citation
Smith, SK, Samsa, G, Ganz, PA, and Zimmerman, S. "Is there a relationship between posttraumatic stress and growth after a lymphoma diagnosis?." Psycho-oncology 23.3 (March 2014): 315-321.
PMID
24123368
Source
epmc
Published In
Psycho-Oncology
Volume
23
Issue
3
Publish Date
2014
Start Page
315
End Page
321
DOI
10.1002/pon.3419

Use of an electronic patient-reported outcome measurement system to improve distress management in oncology.

OBJECTIVE: Management of patient distress is a critical task in cancer nursing and cancer practice. Here we describe two examples of how an electronic patient-reported outcome (ePRO) measurement system implemented into routine oncology care can practically aid clinical and research tasks related to distress management. METHODS: Tablet personal computers were used to routinely complete a standardized ePRO review of systems surveys at point of care during every encounter in the Duke Oncology outpatient clinics. Two cases of use implementation are explored: (1) triaging distressed patients for optimal care, and (2) psychosocial program evaluation research. RESULTS: Between 2009 and 2011, the ePRO system was used to collect information during 17,338 Duke Oncology patient encounters. The system was used to monitor patients for psychosocial distress employing an electronic clinical decision support algorithm, with 1,952 (11.3%) referrals generated for supportive services. The system was utilized to examine the efficacy of a psychosocial care intervention documenting statistically significant improvements in distress, despair, fatigue, and quality of life (QOL) in 50 breast cancer patients. SIGNIFICANCE OF RESULTS: ePRO solutions can guide best practice management of cancer patient distress. Nurses play a key role in implementation and utilization.

Authors
Smith, SK; Rowe, K; Abernethy, AP
MLA Citation
Smith, SK, Rowe, K, and Abernethy, AP. "Use of an electronic patient-reported outcome measurement system to improve distress management in oncology." Palliat Support Care 12.1 (February 2014): 69-73.
PMID
24128592
Source
pubmed
Published In
Palliative & Supportive Care
Volume
12
Issue
1
Publish Date
2014
Start Page
69
End Page
73
DOI
10.1017/S1478951513000345

Assessing the impact of cancer among Dutch non-Hodgkin lymphoma survivors compared with their American counterparts: a cross-national study.

To understand cultural differences in the impact of cancer (IOC) by (i) performing an independent psychometric evaluation of the Dutch version of the Impact of Cancer Scale version 2 (IOCv2) in a non-Hodgkin lymphoma (NHL) sample and (ii) examining differences between Dutch and American NHL survivors in perceived IOC and identifying associations with socio-demographic and clinical characteristics.Data collected from 491 Dutch and 738 American NHL survivors were used in this study. IOCv2 responses were obtained from all survivors; the Dutch survivors also completed the European Organization for Research and Treatment of Cancer Quality of Life Core questionnaire, which measures quality of life.Exploratory factor analysis of the Dutch version yielded a factor solution similar to the American structure but with some subscales merging into single factors. Internal consistency was good; Cronbach's alpha was 0.88 for the Positive and 0.94 for the Negative summary scales. Large differences were observed between survivors, whereby Dutch survivors reported fewer Positive (Δ -0.4, p < 0.001, effect size: 0.27) and more Negative (Δ 0.2, p ≤ 0.001, effect size: 0.13) impacts of cancer independent of socio-demographic and clinical characteristics.Similar impact domains of the IOCv2 were observed in the Dutch sample, providing evidence that IOCv2 scales measure common and important survivor concerns across two different Western nations. Higher positive impacts for US survivors might be explained by more personal control and availability of supportive services. Future research should focus on determinants of the IOC in both Dutch and American survivors to gain better understanding of the factors that might improve it and suggest how health care may be modified toward that end.

Authors
Oerlemans, S; Smith, SK; Crespi, CM; Zimmerman, S; van de Poll-Franse, LV; Ganz, PA
MLA Citation
Oerlemans, S, Smith, SK, Crespi, CM, Zimmerman, S, van de Poll-Franse, LV, and Ganz, PA. "Assessing the impact of cancer among Dutch non-Hodgkin lymphoma survivors compared with their American counterparts: a cross-national study." Psycho-oncology 22.6 (June 2013): 1258-1265.
PMID
22833503
Source
epmc
Published In
Psycho-Oncology
Volume
22
Issue
6
Publish Date
2013
Start Page
1258
End Page
1265
DOI
10.1002/pon.3131

Demographic and disease characteristics associated with non-hodgkin lymphoma survivors' quality of life: does age matter?

To examine demographic and disease characteristics by age and the moderating effect of age on quality of life (QOL) among non-Hodgkin lymphoma (NHL) survivors.A cross-sectional, secondary analysis study of NHL survivors.Two North Carolina cancer registries.741 NHL survivors with a mean age of 62 years and a mean time since diagnosis of 10 years.Mailed surveys were sent to individuals treated for NHL. All analyses were conducted using SPSS®, version 18.0. Multiple regression was used to analyze relationships among demographic and disease characteristics, age, and QOL.Demographic, disease, and clinical characteristics on QOL.In relation to QOL, income and gender were moderated by age; for example, younger survivors who earned less than $30,000 annually had a poorer QOL. Women reported a higher QOL than men.Age was a moderator for income and an indicator for how income could affect care of younger survivors. Men reported a lower QOL than women and gender-specific resources may be helpful to them.Nursing research should focus on age-sensitive resources targeted for younger NHL survivors.Age is an important characteristic that impacts overall health-related QOL. Oncology nurses are instrumental in identifying patients at all ages who could benefit from age-specific resources.

Authors
Leak, A; Smith, SK; Crandell, J; Jenerette, C; Bailey, DE; Zimmerman, S; Mayer, DK
MLA Citation
Leak, A, Smith, SK, Crandell, J, Jenerette, C, Bailey, DE, Zimmerman, S, and Mayer, DK. "Demographic and disease characteristics associated with non-hodgkin lymphoma survivors' quality of life: does age matter?." Oncology nursing forum 40.2 (March 2013): 157-162.
PMID
23448740
Source
epmc
Published In
Oncology Nursing Forum
Volume
40
Issue
2
Publish Date
2013
Start Page
157
End Page
162
DOI
10.1188/13.onf.157-162

A procedure for obtaining impact of cancer version 2 scores using version 1 responses.

Psychometric scales often change over time, complicating comparison of scores across different versions. The Impact of Cancer (IOC) scale was developed to measure quality of life of long-term cancer survivors. We sought to develop a method for scoring the earlier version, IOCv1, to obtain scores comparable to IOCv2, which is the recommended version.Data from 1,828 cancer survivors who had completed a questionnaire including all IOCv1 and IOCv2 items were randomly split into training, validation and test sets. The training and validation sets were used to develop and validate linear regression models for predicting each IOCv2 item missing from IOCv1. The models were then applied to the test set to obtain pseudo-IOCv2 scores, which were compared to observed scores to assess predictive performance of the models in independent data.Observed and pseudo-IOCv2 scale scores were highly correlated in the test sample and had mean differences near zero. The models performed especially well in predicting summary scale scores, with correlations exceeding 0.98.The approach facilitates comparison across samples of survivors surveyed using different versions of the IOC and may be useful to other investigators trying to compare participants surveyed using different versions of the same instrument.

Authors
Crespi, CM; Ganz, PA; Petersen, L; Smith, SK
MLA Citation
Crespi, CM, Ganz, PA, Petersen, L, and Smith, SK. "A procedure for obtaining impact of cancer version 2 scores using version 1 responses." Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation 22.1 (February 2013): 103-109.
PMID
22302619
Source
epmc
Published In
Quality of Life Research
Volume
22
Issue
1
Publish Date
2013
Start Page
103
End Page
109
DOI
10.1007/s11136-012-0127-5

Quality of life among long-term survivors of non-Hodgkin lymphoma: a follow-up study.

PURPOSE: Little is known about change in quality of life (QOL) among long-term cancer survivors. We examined change over time in QOL among long-term survivors of non-Hodgkin lymphoma and identified demographic, clinical, and psychosocial risk factors for poor outcomes. METHODS: Surveys were mailed to 682 lymphoma survivors who participated in a study 5 years earlier, when on average they were 10.4 years postdiagnosis. Standardized measures of QOL, perceptions of the impact of cancer, symptoms, medical history, and demographic variables were reported at both time points and examined using linear regression modeling to identify predictors of QOL over time. RESULTS: A total of 566 individuals participated (83% response rate) who were a mean of 15.3 years postdiagnosis; 52% were women, and 87% were white. One third of participants (32%) reported persistently high or improved QOL, yet a notable proportion (42%) reported persistently low or worsening QOL since the earlier survey. Participants who received only biologic systemic therapy reported improvement in physical health despite the passage of time. Older age, more comorbidity, and more or increasing negative and decreasing positive perceptions of cancer's impact were independent predictors of poor QOL. Lymphoma symptom burden, less social support, and having received a transplantation were related to negative perceptions of cancer's impact. CONCLUSION: Moderate to severe symptom burden, limited social support, or having received a transplantation should alert the clinician to potential need for supportive services. Perceptions of cancer's impact are associated with QOL cross-sectionally and longitudinally; modifying these perceptions may thus provide a strategy for improving QOL.

Authors
Smith, SK; Mayer, DK; Zimmerman, S; Williams, CS; Benecha, H; Ganz, PA; Edwards, LJ; Abernethy, AP
MLA Citation
Smith, SK, Mayer, DK, Zimmerman, S, Williams, CS, Benecha, H, Ganz, PA, Edwards, LJ, and Abernethy, AP. "Quality of life among long-term survivors of non-Hodgkin lymphoma: a follow-up study." J Clin Oncol 31.2 (January 10, 2013): 272-279.
PMID
23213093
Source
pubmed
Published In
Journal of Clinical Oncology
Volume
31
Issue
2
Publish Date
2013
Start Page
272
End Page
279
DOI
10.1200/JCO.2011.40.6249

Patient and provider preferences for survivorship care plans.

Survivorship care plans (SCPs) are tools used to assist in the transition from treatment to surveillance cancer care. However, few studies have investigated survivor and provider preferences regarding SCPs. Our purpose was to explore survivor and primary care provider preferences regarding content, format, and delivery of SCPs.Focus groups and provider interviews were performed in 2010. Five different templates were presented to study participants for their feedback. Each SCP included a treatment summary, surveillance schedule, and care plan for the same fictitious patient. Sessions were transcribed, and field notes taken.Four focus groups (n = 29 survivors) and five primary care providers participated. No cancer survivors had ever received a written SCP. We found clear preferences for the Journey Forward format (with some modifications) and face-to-face delivery (print or electronic) to the survivor by his or her oncologist just before or soon after completion of treatment. Primary care providers preferred an abbreviated version.Written SCPs were endorsed by all patients and primary care providers as helpful communication tools. However, if used alone, the SCP would be insufficient to ease the transition to follow-up care. Improved communication and care coordination were identified as important for survivorship care that went beyond what this document might provide.

Authors
Mayer, DK; Gerstel, A; Leak, AN; Smith, SK
MLA Citation
Mayer, DK, Gerstel, A, Leak, AN, and Smith, SK. "Patient and provider preferences for survivorship care plans." Journal of oncology practice 8.4 (July 2012): e80-e86.
PMID
23181005
Source
epmc
Published In
Journal of Oncology Practice
Volume
8
Issue
4
Publish Date
2012
Start Page
e80
End Page
e86
DOI
10.1200/jop.2011.000401

Post-traumatic stress symptoms in long-term non-Hodgkin's lymphoma survivors: does time heal?

PURPOSE: Little is known about the trajectory of post-traumatic stress disorder (PTSD) symptoms in cancer survivors, despite the fact that such knowledge can guide treatment. Therefore, this study examined changes in PTSD symptoms among long-term survivors of non-Hodgkin's lymphoma (NHL) and identified demographic, clinical, and psychosocial predictors and correlates of PTSD symptomatology. PATIENTS AND METHODS: Surveys were mailed to 682 NHL survivors who participated in an earlier survey and now were at least 7 years postdiagnosis. Information was obtained regarding PTSD symptoms, positive and negative perceptions of the cancer experience (ie, impact of cancer), and other potential correlates of PTSD. RESULTS: A total of 566 individuals participated (83% response rate) with a median of 12.9 years since diagnosis; respondents were 52% female and 87% white. Although half (51%) of the respondents reported no PTSD symptoms and 12% reported a resolution of symptoms, more than one-third (37%) reported persistence or worsening of symptoms over 5 years. Survivors who reported a low income, stage ≥ 2 at diagnosis, aggressive lymphoma, having received chemotherapy, and greater impact of cancer (both positive and negative) at the initial survey had more PTSD symptoms at follow-up. In multivariable analysis, income and negative impacts of cancer were independent predictors of PTSD symptoms. CONCLUSION: More than one-third of long-term NHL survivors experience persisting or worsening PTSD symptoms. Providers should be aware of enduring risk; early identification of those at prolonged risk with standardized measures and treatments that target perceptions of the cancer experience might improve long-term outcomes.

Authors
Smith, SK; Zimmerman, S; Williams, CS; Benecha, H; Abernethy, AP; Mayer, DK; Edwards, LJ; Ganz, PA
MLA Citation
Smith, SK, Zimmerman, S, Williams, CS, Benecha, H, Abernethy, AP, Mayer, DK, Edwards, LJ, and Ganz, PA. "Post-traumatic stress symptoms in long-term non-Hodgkin's lymphoma survivors: does time heal?." J Clin Oncol 29.34 (December 1, 2011): 4526-4533.
PMID
21990412
Source
pubmed
Published In
Journal of Clinical Oncology
Volume
29
Issue
34
Publish Date
2011
Start Page
4526
End Page
4533
DOI
10.1200/JCO.2011.37.2631

Quality of life domains among non-Hodgkin lymphoma survivors: an integrative literature review.

Survival rates of individuals with non-Hodgkin lymphoma (NHL) have increased in the past several years, as has the prevalence of older adults who are managing late and long-term effects of the disease and its treatment. In this integrative review, the state of the science for determining the quality of life (QOL) among NHL survivors is outlined. An online search of Medline, Cumulative Index to Nursing and Allied Health Literature (CINAHL), PsycINFO, and the Cochrane Library databases was conducted using the following Keywords: non-Hodgkin lymphoma, health-related quality of life, quality of life, and impact of cancer. Eighteen studies published between 2000 and 2010 are reviewed. Of these, 17 were descriptive, cross-sectional designs, and one was a systematic review. The studies included participants of varying ages and years post-diagnosis as reported in several countries. Importantly, many used one or more QOL measures as outcome variables. Future research is needed on older and minority cancer populations and should include longitudinal and interventional studies.

Authors
Leak, A; Mayer, DK; Smith, S
MLA Citation
Leak, A, Mayer, DK, and Smith, S. "Quality of life domains among non-Hodgkin lymphoma survivors: an integrative literature review." Leukemia & lymphoma 52.6 (June 2011): 972-985. (Review)
PMID
21534866
Source
epmc
Published In
Leukemia & Lymphoma (Informa)
Volume
52
Issue
6
Publish Date
2011
Start Page
972
End Page
985
DOI
10.3109/10428194.2011.563884

Correlates of quality of life-related outcomes in breast cancer patients participating in the Pathfinders pilot study.

OBJECTIVE: In a pilot study, participation in the Pathfinders program was associated with reductions in distress and despair and improvements in quality of life (QOL) among advanced breast cancer patients. This study explores the relationship between psychosocial resources invoked through the Pathfinders intervention and outcomes. METHODS: Advanced breast cancer patients were enrolled in a prospective, single-arm, pilot study of the Pathfinders psychosocial program. Participants met at least monthly with a licensed clinical social worker who administered the Pathfinders intervention, which focused on strengthening adaptive coping skills, identifying inner strengths, and developing a self-care plan. Longitudinal assessments over 6 months used validated instruments to assess changes in Pathfinders targets (coping, social support, self-efficacy, spirituality, and optimism) and outcomes (distress, despair, QOL, and fatigue). Multiple linear regression models examined the joint effect of average changes in target subscales on average outcome changes, adjusted for baseline outcome scores and patient characteristics. RESULTS: Participants (n=44) were: mean age 51 (SD, 12), 20% non-Caucasian, 50% college degree, and 75% married. Improvements in active coping skills, self-efficacy, and spiritual meaning/peace significantly correlated with an improvement in despair after adjustment for demographic characteristics (all P<0.05). Improvements in social support significantly correlated with positive changes in distress (P<0.05). Gains in learned optimism independently correlated with an increase in overall QOL (P<0.01). CONCLUSIONS: In this pilot assessment, changes in pre-defined Pathfinders targets such as coping skills, social support, self-efficacy, spirituality, and optimism correlated with improvements in patient-reported outcomes.

Authors
Smith, SK; Herndon, JE; Lyerly, HK; Coan, A; Wheeler, JL; Staley, T; Abernethy, AP
MLA Citation
Smith, SK, Herndon, JE, Lyerly, HK, Coan, A, Wheeler, JL, Staley, T, and Abernethy, AP. "Correlates of quality of life-related outcomes in breast cancer patients participating in the Pathfinders pilot study." Psychooncology 20.5 (May 2011): 559-564.
PMID
20878862
Source
pubmed
Published In
Psycho-Oncology
Volume
20
Issue
5
Publish Date
2011
Start Page
559
End Page
564
DOI
10.1002/pon.1770

An exploratory model of the relationships between cancer-related trauma outcomes on quality of life in non-Hodgkin lymphoma survivors.

Given that more than one third of some cohorts of cancer survivors exhibit post-traumatic stress disorder (PTSD) symptomatology, this study examines how trauma outcomes might relate to quality of life (QOL). Eight hundred thirty survivors of adult lymphoma were assessed for PTSD, post-traumatic growth (PTG) and QOL. Structural equation modeling revealed that QOL was best explained by the model in which stressors (e.g., co-morbidities) were mediated by PTSD and PTG. Trauma outcomes mediated the relationship between specific stressors and QOL. These findings support using PTSD and PTG as a diagnostic framework in understanding symptomatology in survivors.

Authors
Smith, SK; Williams, CS; Zimmer, CR; Zimmerman, S
MLA Citation
Smith, SK, Williams, CS, Zimmer, CR, and Zimmerman, S. "An exploratory model of the relationships between cancer-related trauma outcomes on quality of life in non-Hodgkin lymphoma survivors." Journal of psychosocial oncology 29.1 (January 2011): 19-34.
PMID
21240723
Source
epmc
Published In
Journal of Psychosocial Oncology
Volume
29
Issue
1
Publish Date
2011
Start Page
19
End Page
34
DOI
10.1080/07347332.2011.534022

Erratum: Phase 2 pilot study of Pathfinders: A psychosocial intervention for cancer patients (Support Care Center DOI 10.1007/s00520-010-0823-z)

Authors
Abernethy, AP; II, JEH; Coan, A; Staley, T; Wheeler, JL; Rowe, K; Smith, SK; Shaw, H; Lyerly, HK
MLA Citation
Abernethy, AP, II, JEH, Coan, A, Staley, T, Wheeler, JL, Rowe, K, Smith, SK, Shaw, H, and Lyerly, HK. "Erratum: Phase 2 pilot study of Pathfinders: A psychosocial intervention for cancer patients (Support Care Center DOI 10.1007/s00520-010-0823-z)." Supportive Care in Cancer 19.3 (2011): 439--.
Source
scival
Published In
Supportive Care in Cancer
Volume
19
Issue
3
Publish Date
2011
Start Page
439-
DOI
10.1007/s00520-010-1076-6

The impact of cancer and quality of life for post-treatment non-Hodgkin lymphoma survivors.

Recent work suggests that perceptions of the impact of cancer on survivors' lives are associated with physical and mental health and quality of life (QOL) outcomes. This study examines the association between the Impact of Cancer Version 2 Scales (IOCv2) and these outcomes in a large sample of survivors of adult non-Hodgkin lymphoma (NHL).Participants completed a mailed survey to assess physical and mental health (SF-36), cancer-specific QOL (FACT-G) and perceived impact of cancer (IOCv2). Hierarchical multiple regression models, in which demographic, clinical, psychosocial and IOCv2 measures were added sequentially, were employed to evaluate their contribution to explain variance in SF-36 and FACT-G scores.A total of 652 post-treatment NHL survivors participated. Survivors with comorbidities and negative appraisals of life threat and treatment intensity reported worse physical and mental health and QOL (all p<0.05). After controlling for demographic and clinical characteristics, younger respondents reported better physical but worse mental health and QOL (all p<0.01). Lower IOCv2 Negative Impact (all p<0.001) and higher Positive Impact (all p<0.05) scores were associated with better physical and mental health and QOL after controlling for demographic, clinical and psychosocial characteristics.Findings suggest that perceptions of cancer's impact on survivors' lives may influence or be influenced by health status and functioning and QOL. Longitudinal research is needed to establish causality, which could lead to the development of interventions targeting survivors' impact of cancer concerns, and ultimately to the enhancement of overall health and QOL.

Authors
Smith, SK; Crespi, CM; Petersen, L; Zimmerman, S; Ganz, PA
MLA Citation
Smith, SK, Crespi, CM, Petersen, L, Zimmerman, S, and Ganz, PA. "The impact of cancer and quality of life for post-treatment non-Hodgkin lymphoma survivors." Psycho-oncology 19.12 (December 2010): 1259-1267.
PMID
20099255
Source
epmc
Published In
Psycho-Oncology
Volume
19
Issue
12
Publish Date
2010
Start Page
1259
End Page
1267
DOI
10.1002/pon.1684

Informational needs assessment of non-Hodgkin lymphoma survivors and their physicians.

Authors
Friedman, DR; Coan, AD; Smith, SK; Herndon, JE; Abernethy, AP
MLA Citation
Friedman, DR, Coan, AD, Smith, SK, Herndon, JE, and Abernethy, AP. "Informational needs assessment of non-Hodgkin lymphoma survivors and their physicians." Am J Hematol 85.7 (July 2010): 528-532. (Letter)
PMID
20575038
Source
pubmed
Published In
American Journal of Hematology
Volume
85
Issue
7
Publish Date
2010
Start Page
528
End Page
532
DOI
10.1002/ajh.21725

Phase 2 pilot study of Pathfinders: a psychosocial intervention for cancer patients.

PURPOSE: Pathfinders is a multi-faceted psychosocial care program for cancer patients; it was developed in community oncology and adapted to the academic oncology setting. This prospective, single-arm, phase 2 pilot study examined the acceptability and feasibility of Pathfinders for women with metastatic breast cancer. METHODS: Over 3 months, participants completed patient-reported surveys including the Patient Care Monitor (PCM, review of systems), Functional Assessment of Chronic Illness Therapy-Breast Cancer (FACT-B), Self Efficacy, and a single-item survey asking patients whether the program was helpful to them. A technology-based data collection system was used to capture electronic patient-reported outcomes at point of care, report symptoms in real time to clinicians, and collect warehouse data to provide a detailed longitudinal picture of the patient experience when receiving Pathfinders. RESULTS: Participants (n = 50) were: mean age 51 (SD 11); 76% white, 20% black; 74% married; 50% college degree. Forty-two (n = 42) patients completed baseline and 3-month assessments. Statistically significant improvements (all P < 0.05) occurred in PCM subscales for Distress (mean [SE] = -3.42 [1.21]), Despair (-4.53 [1.56]), and Quality of Life (2.88 [0.97]), and the FACT-B Emotional Wellbeing subscale (2.07 [0.46]). Of the 29 participants asked if Pathfinders was helpful, 27 (93%) responded positively and two did not respond. Other instruments measuring symptoms, quality of life, and self-efficacy showed improvement. CONCLUSIONS: In a phase 2 pilot study, Pathfinders was helpful to patients and is feasible in an academic medical center. Follow-up data collected at the 3-month assessment suggest that the program impacts various psychological outcomes, notably distress and despair.

Authors
Abernethy, AP; Herndon, JE; Coan, A; Staley, T; Wheeler, JL; Rowe, K; Smith, SK; Shaw, H; Lyerly, HK
MLA Citation
Abernethy, AP, Herndon, JE, Coan, A, Staley, T, Wheeler, JL, Rowe, K, Smith, SK, Shaw, H, and Lyerly, HK. "Phase 2 pilot study of Pathfinders: a psychosocial intervention for cancer patients." Support Care Cancer 18.7 (July 2010): 893-898.
PMID
20143102
Source
pubmed
Published In
Supportive Care in Cancer
Volume
18
Issue
7
Publish Date
2010
Start Page
893
End Page
898
DOI
10.1007/s00520-010-0823-z

Measuring the impact of cancer: a comparison of non-Hodgkin lymphoma and breast cancer survivors.

Self-report instruments such as the Impact of Cancer (IOC) are designed to measure quality of life (QOL) impacts that cancer survivors attribute to their cancer experience. Generalizability of QOL findings across distinct diagnostic categories of survivors is untested. We compare measurement of the impact of cancer using the IOC instrument in breast cancer (BC) survivors (n = 1,188) and non-Hodgkin lymphoma (NHL) survivors (n = 652).A registry-based sample of NHL survivors completed the IOC questionnaire and the FACT-G, FACT-LYM, Medical Outcomes Study (MOS) SF-36, Post-Traumatic Stress Disorder Checklist-Civilian Version, Post-Traumatic Growth Inventory and MOS Social Support scales. IOC responses of the NHL survivors were subjected to de novo scaling to identify impact domains for comparison to IOC version 2 (IOCv2) domains, which were previously developed based on BC survivor responses. Concurrent validity was assessed by correlating the IOCv2 scales with the other measures. IOCv2 scores were compared between the BC and NHL survivor samples.The BC and NHL survivors exhibited similar impact domains and had factor structures that were largely congruent. The concurrent validity analysis revealed patterns of association that supported the interpretation and validity of the IOCv2 scales. Differences in IOCv2 scores between the BC and NHL groups suggested differential impacts in distinct survivor groups that could be detected using the IOCv2.The results suggest that the IOCv2 measures common and important survivor concerns and support its generalizability to the broader long-term cancer survivor population.Instruments such as the IOCv2 can provide valid assessment of QOL impacts in long-term cancer survivors, facilitating the characterization of these impacts and development of appropriate interventions.

Authors
Crespi, CM; Smith, SK; Petersen, L; Zimmerman, S; Ganz, PA
MLA Citation
Crespi, CM, Smith, SK, Petersen, L, Zimmerman, S, and Ganz, PA. "Measuring the impact of cancer: a comparison of non-Hodgkin lymphoma and breast cancer survivors." Journal of cancer survivorship : research and practice 4.1 (March 2010): 45-58.
PMID
19967410
Source
epmc
Published In
Journal of Cancer Survivorship
Volume
4
Issue
1
Publish Date
2010
Start Page
45
End Page
58
DOI
10.1007/s11764-009-0106-1

Health status and quality of life among non-Hodgkin lymphoma survivors.

: A growing body of evidence suggests that long-term survivors with 1 of the more common forms of adult cancer report a quality of life (QOL) similar to that in the general population. However, specific concerns have been identified (sexual dysfunction, fatigue, distress) in this population. Also, less is known concerning survivors of adult non-Hodgkin lymphoma (NHL), a disease often marked by alternating periods of disease and remission. Therefore, in the current study, the authors compared the QOL status of individuals who reported having active NHL with the QOL status of individuals who were disease-free short-term survivors (STS) (2-4 years postdiagnosis) and long-term survivors (LTS) (> or =5 years postdiagnosis).Eligible survivors completed a mailed survey with validated measures, including physical and mental health status measured with the Medical Outcomes Study 36-item Short Form, cancer-related QOL, the Functional Assessment of Cancer Therapy-Lymphoma module, and self-reported impact of cancer. Other data were collected to examine as correlates.: Seven hundred sixty-one survivors identified from 2 North Carolina cancer registries participated. The average survivor was 10.4 years postdiagnosis (range, 2-44 years postdiagnosis) and was age 62.7 years (range, 25-92 years). Survivors with active disease (n = 109) demonstrated worse physical and mental health functioning, worse QOL, and less positive and more negative impacts of cancer compared with disease-free survivors (n = 652; all P < or = .01). No significant differences were observed between STS and LTS.Although survivors with NHL who had active disease reported more negative outcomes compared with off-treatment survivors, the length of time after diagnosis did not appear to matter with regard to outcomes for STS or LTS. In addition, mixed results from comparisons with general population norms suggested the need for supportive care for this diverse survivorship group.

Authors
Smith, SK; Zimmerman, S; Williams, CS; Zebrack, BJ
MLA Citation
Smith, SK, Zimmerman, S, Williams, CS, and Zebrack, BJ. "Health status and quality of life among non-Hodgkin lymphoma survivors." Cancer 115.14 (July 2009): 3312-3323.
PMID
19452546
Source
epmc
Published In
Cancer
Volume
115
Issue
14
Publish Date
2009
Start Page
3312
End Page
3323
DOI
10.1002/cncr.24391

Post-traumatic stress outcomes in non-Hodgkin's lymphoma survivors.

A large body of evidence suggests that being diagnosed with and treated for cancer adversely affects functioning and quality of life, yet less is known about longer term outcomes. Therefore, this study aims to estimate the prevalence of post-traumatic stress disorder (PTSD) symptoms in survivors of adult non-Hodgkin's lymphoma (NHL) who are at least 2 years postdiagnosis and identify the risk factors associated with PTSD symptoms, with a focus on those that are amenable for screening and modifiable.A total of 886 NHL survivors identified from the cancer registries of two hospitals in North Carolina participated, ranging in age from 25 to 92 years old and ranging from 2 to 44 years postdiagnosis. Survivors were mailed a survey that assessed PTSD symptoms and quality of life.Participants averaged 10.2 years postdiagnosis, and most (61%) reported no PTSD symptoms. The adjusted prevalence for full PTSD was 7.9%, with an additional 9.1% meeting criteria for partial PTSD. Modifiable risk factors that were independently associated with PTSD in multiple linear regression included less social support, negative appraisals of life threat and treatment intensity, and more employment and insurance issues. Additionally, several demographic characteristics (nonwhite race, less education, and younger age) and clinical or health-related factors (active disease, more recent diagnosis, and more comorbidity) were independently associated with PTSD.Although only 8% of survivors met PTSD diagnostic criteria, the impact of a cancer diagnosis and treatment persists for many survivors, as evidenced in 39% of this sample. Early identification of those at risk could enable treatment to minimize PTSD symptomatology.

Authors
Smith, SK; Zimmerman, S; Williams, CS; Preisser, JS; Clipp, EC
MLA Citation
Smith, SK, Zimmerman, S, Williams, CS, Preisser, JS, and Clipp, EC. "Post-traumatic stress outcomes in non-Hodgkin's lymphoma survivors." Journal of clinical oncology : official journal of the American Society of Clinical Oncology 26.6 (February 2008): 934-941.
PMID
18281667
Source
epmc
Published In
Journal of Clinical Oncology
Volume
26
Issue
6
Publish Date
2008
Start Page
934
End Page
941
DOI
10.1200/jco.2007.12.3414
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