Patient Advocacy Group Leaders' Perceptions on Primary Care's Role in Caring for Patients With a History of Breast Cancer.

backgroundCancer advocacy groups engage patients, families and caregivers in navigating the cancer landscape, with a focus on early detection/screening and providing psychosocial and financial support during and after treatment. These groups are influential among their communities, funders and policymakers.

objectiveWe wished to understand perceptions of breast cancer advocacy group leaders on primary care's role in breast cancer survivorship care, given limited primary care engagement despite endorsement by the National Cancer Institute (NCI).

methodsAs part of a larger NCI-funded study, we used purposive sampling to select leaders from a diversity of patient advocacy groups for in-depth interviews (n = 9). After obtaining consent, interviews were conducted and recorded on Zoom, professionally transcribed, and analysed using an established immersion-crystallisation process to identify themes and patterns.

resultsWe interviewed leaders (n = 9) from two local, three regional and four national advocacy groups, five of whom had personal experiences with breast cancer. These advocates emphasised that transitions away from the safety of oncology to primary care are difficult for patients. They felt patients with a history of breast cancer have unique and complex needs that are different from the standards of care found within primary care settings, and primary care clinicians are not adequately prepared to address these. In reflecting on the ideal role of primary care, they highlighted listening to patients, identifying issues and referring patients to appropriate specialists, but ultimately stressed that patients needed to advocate for themselves in the current healthcare environment.

conclusionsAdvocacy groups typically start as grass root efforts motivated by perceptions of inadequate support and care for cancer patients. As such, there is potential for advocacy groups to shape the conversation to improve collaboration between oncology and primary care by articulating and advocating for better primary care involvement in survivorship care. PATIENT OR PUBLIC CONTRIBUTION: The project's steering committee included cancer survivors and cancer advocacy group leaders who provided feedback on the project design and made recommendations for people to interview. Steering committee retreats were later held after the completion of interviews to reflect on emerging findings and plan dissemination strategies. The study team included a cancer survivor and several members whose immediate family members had a history of cancer. They were actively engaged in the design, analysis and manuscript writing.