Tara Schmidlen, Podium presentation National Society of Genetic Counselors, October 2023

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About four percent of the US population is estimated to have inherited cancer risk. Expanding testing criteria, calls for universal screening, and new service delivery models are accelerating the identification of these individuals but less is known about how they are managed over time. We surveyed one hundred individuals affected by hereditary cancer to better understand current care experiences and perceived utility of a digital intervention to support long-term care management. Participants were recruited from the Facing Hereditary Cancer Empowered (FORCE) community via their monthly newsletter and social media channels. Eligible individuals were age 18 or older with a pathogenic or likely pathogenic variant associated with hereditary cancer. Participants completed an online survey covering demographics, use of digital health tools, medical care and other support, and perceived utility of the Nest digital care navigator, a platform where patients can readily access their genetic information, personalized care plan, and support tools. All participants were female at birth between ages 18 and 79. Most identified as white (88%), had a bachelor’s degree or higher (84%), and were BRCA1/2 positive (63%). Nearly all participants reported comfort with technology (98%), and 70% use digital health tools whenever possible. Genetic counselors returned results for 70% of participants but only coordinated care for 4%. Care was most commonly coordinated by the participants themselves (34%), followed by oncologists (29%) and PCPs (23%). Participants described care coordination and centralization, improved scheduling, reminders, care plan documentation, and better insurance coverage as factors that would make it easier to follow-up with recommended care. While 92% of participants were satisfied with their current care, 78% expressed a need for additional support with mental health (40%), education (31%), coordination of care (30%), and healthy lifestyle (29%) ranking highest. Almost all participants indicated they would use (67%) or possibly use (31%) the digital care navigator. Features of highest perceived value were the personalized, up-to-date care plan and care reminders, aligning with stated needs. Even well-supported individuals are interested in a centralized, accessible place to understand and manage care for inherited cancer predisposition longitudinally. A digital care navigator is perceived favorably among this group and aligns with their needs. This solution can extend genetic counselor reach and empower patients to take a more active role in their care.