Recruitment, Retention, and Patient Engagement of Adolescents and Young Adult Cancer Survivors in Psycho-Oncology Research: A Qualitative Study.
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BACKGROUND: Adolescent and young adult (AYA) cancer patients/survivors are underrepresented in psycho-oncology, limiting research generalizability. This study identified strategies to improve AYA recruitment and retention by consulting survivors and health care professionals (HCPs). METHODS: Fourteen online sessions were conducted, comprising eight individual interviews and six small group discussions (2-4 participants), with 15 AYAs (18-25 years; 47% culturally and linguistically diverse [CALD]) and 9 HCPs (33% clinical; 67% researchers). Data were analyzed using inductive content analysis. RESULTS: AYAs and HCPs considered research participation through an implicit "value proposition" shaped by three interrelated domains: trust, respect for time, and ease of engagement. Trust acted as a gatekeeper, with AYAs preferring studies introduced by trusted clinicians. CALD survivors valued rapport with culturally matched researchers. Financial incentives signaled respect for time and legitimacy, with most survivors favoring guaranteed, staggered payments over lotteries, although preferences varied. Ease of engagement supported recruitment and retention through low-burden designs, digital communication, procedural flexibility, and clear materials. Reduced burden appeared to reinforce trust, and trusted relationships appeared to make participation easier. CONCLUSION: Findings suggest that recruitment and retention of AYAs may benefit from HCP-led recruitment, guaranteed financial incentives, and low-burden digital study designs, delivered through integrated, survivor-centered and culturally tailored approaches that build relational trust and reduce structural barriers to participation. Future studies should evaluate and report on the effectiveness of recruitment strategies and further test the preliminary framework proposed here to strengthen the evidence base for AYA research engagement.