A Community-Led Approach to Addressing Health Disparities Among Adolescent and Young Adult Cancer Survivors

Adolescent and young adult (AYA) cancer survivors (i.e., those diagnosed between the ages of 15 and 39 years) experience significant health and health care disparities. Formal evaluation of the role of community-based organizations in addressing these disparities is limited. Through a novel Health Equity Initiative, which included a series of community-driven conversations), Stupid Cancer, an AYA-focused cancer patient advocacy organization, sought to better understand the perceived impact of racism, homophobia, transphobia, and ableism on supportive cancer care among AYAs.

This paper describes how Stupid Cancer developed and implemented its Health Equity Initiative programming (2021-2023) and presents findings from this program. Community-driven conversations comprised of several virtual focus groups, working groups, and town halls conducted via Zoom over the two years. We performed thematic analysis of transcripts from community-driven conversations.

Three themes were identified from community-driven conversations across initiative events 1) perception, 2) transition, and 3) representation. Based on these findings and further community discussions, four solutions were codeveloped with community members, which serve as proposed mechanisms for addressing identified health care inequities among AYA cancer survivors.

Inclusivity and representation are vital components of AYA cancer care delivery. More research and quality improvement initiatives are needed to identify community-level interventions to mitigate health care disparities, ensuring all AYAs receive access to high-quality cancer care.