Navigator Helps Patients Overcome Barriers to Onco-Fertility Treatment
Assisted reproduction technologies designed to counter potential fertility losses among cancer patients offer many new and innovative options, but only a minority of patients who might benefit take advantage of them.
The Duke Fertility Preservation Program is working to increase awareness of these options through greater outreach to both patients and potential referring providers, according to program director Kelly Acharya, MD. Acharya wants to communicate with more patients because evidence shows that just hearing about one’s care options eases a patient’s later regrets, whether or not the patient takes advantage of them.
As part of this outreach, the Duke Onco-Fertility Program brought on a patient navigator to help lower the barriers to access to care and increase awareness of fertility preservation innovations that often surprise both patients and providers.
“The patient navigator is a bridge between the patients and the providers, coordinating multiple aspects of that patient’s care. The navigator provides a centralized point of contact, which makes it easier for the oncology providers to refer patients,” Acharya says. CONTINUE READING
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Gayathri Devi, PhD, professor of Surgery and of Pathology, Duke University School of Medicine, and Duke PhD student Larisa Gearhart-Serna are senior and lead authors of a paper that found that urban environmental exposures drive increased breast cancer incidence. (The poster behind them is unrelated to this specific study.)
A Duke Health analysis of breast cancer in North Carolina showed that the state’s urban counties had higher overall incidences of disease than rural counties, especially at early stages upon diagnosis.
The findings, appearing in the journal Scientific Reports, serve as a national template for assessing the impact of poor environmental quality across different stages of breast cancer, which is marked by highly diverse origins and mechanisms for spreading.
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In August 2023, a team of volunteers led by Trinitia Cannon, MD (third from left), Leda Scearce, CCC-SLP, MM, MS, and Dina Abouelella, MPH, which also included Tammara Watts, MD, PhD (center) and Katharine Ciarrocca, DMD, MSEd, partnered with North Raleigh International Baptist Church and Duke Raleigh Hospital to offer head and neck cancer screenings. Dozens of families from the Cedar Creek Apartment Complex community came out for the free screenings, education, and games, and Duke Raleigh Hospital donated backpacks full of school supplies.
TheDuke University School of Medicine Department of Head and Neck Surgery & Communication Sciences (HNS&CS) recently launched Project CHECKERS (Community Head and NEck Cancer Knowledge, Engagement, Research and Screening) a Duke Cancer Institute-funded pilot project to bring head and neck cancer resources and education to the broader Durham community.
Led by DCI head and neck surgeon Trinitia Cannon, MD, an associate professor in the Department, the project will be the Department’s first community-based participatory research project and the first such head and neck cancer screening and cancer prevention education project in North Carolina.
Evolving Community Research
The Project CHECKERS team will use a mixed methodology, which includes traditional surveys and screenings as well as interviews and focus groups.
One of their community partners will be the Cedar Creek Apartment Complex community in North Raleigh. Many of these families are refugees — from at least seven different countries in Africa, Asia, and the Middle East — who speak Farsi, French, Swahili, Arabic, and other languages. They are building new lives in North Carolina, in a culture and language that is new to many of them. As is the case with many similar communities, their healthcare needs often go unmet.
The investigators believe that, compared to traditional methods, mixed-method research is an improved way to establish a community partnership, highlight gaps in the community’s knowledge and risk perception, and pave the way for successful future health interventions.
According to co-PI Nosayaba (Nosa) Osazuwa-Peters, BDS, MPH, PhD, an associate professor in the Department of Head and Neck Surgery & Communication Sciences, Project CHECKERS takes an important step in improving community engagement.
“Traditional research is very systematic, very top-down. The researchers have knowledge and decide what they believe the community needs. But these outside scientific experts do not know the values, the culture, the knowledge, or the risks inherent in that community,” he explained.
For example, traditional surveys restrict participants to answering either yes or no; for many people, that binary does not tell a complete story.
“Project CHECKERS will help us understand the lived experiences of people in these communities,” added Osazuwa-Peters. “We’ll learn about context, and we’ll learn to ask questions that allow community members to express themselves. We’ll get responses we would never get based on yes or no.”
Building a Partnership
Project CHECKERS kicked off this fall with focus groups and interviews with community members facilitated by Laura Fish, PhD, MPH, assistant professor in Family Medicine and Community Health, Duke University School of Medicine, and program director for the Behavioral Health and Survey Research Core (a DCI shared resource). An advisory board will provide feedback from both clinical and community perspectives.
Lessons learned from these conversations will help the team develop a knowledge and risk factor survey that will be administered during two head and neck cancer screening events with the community in 2024.
The CHECKERS team will also recruit providers outside the department to participate in these events to address other health concerns in the community such as primary care, mental health, and women’s health.
The long-term goal of Project CHECKERS is to show the benefits of tailoring head and neck cancer screening programs to the communities being served, and how that personalization can improve prevention, early detection, and overall survival in high-risk individuals who have limited access to care.
Noted Osazuwa-Peters, “The mixed-methods framework helps us understand not just whether an intervention works, but how, why, and for whom.”
Community Partners
Another plus to mixed-methods research is its appeal to community partners who might otherwise be hesitant to work with researchers.
“The design places a high value on the stories behind the numbers,” explained Cannon, “so these projects are especially attractive to community partners such as faith-based organizations, whose priority is improving practice and outcomes, more so than research and advancing knowledge.”
Project CHECKERS will provide a valuable bridge between Duke and the North Raleigh International Baptist Church (NRIBC), which ministers to a large immigrant community. NRIBC’s Pastor, Patrick Warutere, invited Duke to participate in the church’s inaugural Health and Dignity for All Fair in Raleigh in 2022. Cannon and CHECKERS co-PI Leda Scearce,CCC-SLP, MM, MS, a Duke speech pathologist and director of Community Engagement for the Department of HNS&CS, recruited nurses, medical students, and resident volunteers to provide HNC screenings for the event.
“We immediately felt a kinship with NRIBC’s Pastor Patrick Warutere and his leadership team,” shared Searce. “By the end of the day, we knew we wanted to continue to work together and set up a meeting the following week.”
Duke HNS&CS and the NRIBC team worked closely to develop the research plan and ensure that the goals and expectations of each group were aligned and transparent.
“That relationship with NRIBC has enabled us to incorporate the community’s perspectives into the development of Project CHECKERS,” said Scearce. “Our aim was to amplify the assets and expertise of the community members themselves.”
Cannon anticipates that Project CHECKERS will become a framework for future projects.
“We are looking forward to similar initiatives in hearing health for older adults, right-hemisphere stroke awareness, and more.”
