Purpose: This study aimed to elucidate experiences and preferences for survivorship care delivery among adolescent and young adult (AYA) childhood cancer survivors who experienced healthcare transitions.
Methods: Eight focus groups were conducted with two groups of AYA survivors and their parents: (1) those who recently completed cancer treatment and are beginning follow-up care and (2) those who disengaged in follow-up care after the transition from pediatric to adult survivorship clinics. Interviewers used a structured interview guide that contained questions about perceptions and preferences for survivorship care models, resources, and tools (e.g., a survivorship care plan). We employed directed content analysis techniques to identify and organize relevant themes.
Results: Results of this study support six primary themes for optimizing survivorship care models for AYA: (1) improve knowledge of late effects and need for LTFU; (2) provide supportive services that help to address fear and uncertainty about health; (3) adapt survivorship care to be consistent with AYA developmental factors; (4) increase support surrounding healthcare transitions; (5) improve survivorship care communication and coordination between patients and families, and between providers; and (6) incorporate digital health tools.
Conclusions: These groups represent vulnerable patient populations in AYA survivorship care and their perspectives highlight potential clinical and research priorities for enhancing long-term care models.
Implications for cancer survivors: Elucidating AYA and parent recommendations for survivorship care delivery can help to promote continuous engagement in care, target unmet needs, and promote health through survivorship models that are deemed acceptable to both patients and families.
Keywords: Adolescent and young adult; Long-term follow-up care; Qualitative research; Transition of care.