Abstract / Summary
Adolescent and young adult (AYA) cancer survivors experience substantial late and long-term effects and require high-quality survivorship care. This work examines methodological challenges and related opportunities in assessing survivorship care availability, utilization, and key barriers and facilitators for AYAs, using the new National Standards for Cancer Survivorship Care as a guiding framework. Studies were conducted across nine geographically diverse health care systems in seven states (CA, FL, MN, NJ, NY, TX, WA), including seven NCI-designated comprehensive cancer centers, a large integrated health care system, and a county safety-net hospital. Designs included retrospective cohort and mixed methods approaches. Data collection methods comprised EHR abstraction; surveys of AYAs, clinicians, and administrators; and in-depth interviews and/or focus groups with AYAs, clinicians, and administrators. Across studies, AYAs were diagnosed between 2014 and 2024, were 15–44 years old at diagnosis, predominantly female, and racially and ethnically diverse, and had common AYA cancers. Studies encountered challenges in defining survivorship care, accounting for AYA-specific factors, and addressing the complexity of survivorship care and the NCI Standards. First, we observed difficulties in defining and operationalizing survivorship care components, particularly in EHR data and across audiences who differed in how they understood survivorship care. Second, AYA-related factors such as geographic mobility, insurance changes, and fragmented care during young adulthood complicated assessment, especially for longitudinal analyses. Finally, the complexity of survivorship care and of the standards themselves posed substantial measurement challenges. In this context, collaboration and integration of data within and across AYA survivorship studies represent key research opportunities. Addressing known AYA barriers and priorities will be critical for guiding how the survivorship standards are evaluated and incorporated into clinical practice for AYAs. Advancing the National Standards for Cancer Survivorship Care for AYAs requires nuanced approaches that integrate multiple perspectives, data sources, and care contexts.