Cohort Profile: The Adolescent and Young Adult Tracking Engagement and Management Skills (AYA TEAMS) Longitudinal Cohort of Childhood Cancer Survivors in the United States.
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PURPOSE: To describe the rationale, methods, and baseline sample descriptives of the Adolescent and Young Adult Tracking Engagement and Management Skills (AYA TEAMS) cohort. The AYA TEAMS study is a longitudinal observational cohort study that aims to identify determinants and patterns of self-management and engagement in cancer-related long-term follow-up (LTFU) care and validate a novel transition readiness assessment among adolescent and young adult (AYA) survivors of childhood cancer. PARTICIPANTS: AYA survivors of childhood cancer (ages 16-25) and their caregivers were enrolled from 3 large pediatric oncology centers across the United States from 2020-2022 and followed for 2 years (minimum) to 3 years and 3 months (if transferred to adult care). AYA inclusion criteria were: past childhood cancer diagnosis, at least 2 years off-treatment, 5 years since diagnosis, engaged with the participating pediatric health care system within the last 18 months, cognitively able to complete study procedures, and English speaking. AYA completed a comprehensive battery of measures including assessments of self-management and transition readiness at baseline and annually for 2 years. For AYA transferred to adult care, separate measures were administered at the time of transfer (following last pediatric visit) and 15 months post transfer. Caregivers (English or Spanish-speaking) completed a single survey at baseline to capture family functioning, psychosocial risk, and transition readiness. Cancer diagnosis, treatment modalities, treatment-related late effects, and engagement in LTFU care were captured via electronic medical record review. In total, 709 AYA were enrolled and 587 were included in the final cohort [Mage=19.7 years, 52.5% female, 38.2% from racial and/or ethnic minoritized groups, (REMG)]. The cohort was on average 7.3 years old at the time of diagnosis and 10.5 years off treatment. Half (52.5%) were survivors of leukemia/lymphoma, 38.0% solid tumors, and 9.5% central nervous system tumors. Three hundred and ninety-nine caregivers participated (90% mothers). FINDINGS TO DATE: Enrolled AYA excluded from the baseline cohort were more likely to be male, from REMG, and/or to enroll without a caregiver. Baseline cohort differences between sites emerged for age, race and ethnicity, socioeconomic status, and treatment modalities and intensity. FUTURE PLANS: Data collection was completed in April 2025. Findings from this cohort will elucidate important predictors of self-management and engagement in recommended annual LTFU and inform the design of interventions to reduce disengagement in LTFU.