Work

Cohort Profile: The Adolescent and Young Adult Tracking Engagement and Management Skills (AYA TEAMS) Longitudinal Cohort of Childhood Cancer Survivors in the United States

Year: 2026

Type: preprint

Abstract: ABSTRACT 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 [M age =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. Strengths and Limitations This study is the first known prospective cohort of AYA-only long-term survivors of childhood cancer in the United States recruited from pediatric cancer centers. This study achieved high enrollment and retention rates across a medically and demographically diverse sample. Informed by multiple theoretical self-management models, this study will be able to examine predictors and transactional relationships of AYA survivor self-management, including engagement in pediatric and adult cancer-related long-term follow-up care. Reliance on English-speaking AYA and those currently engaged with the health care system are limitations.

Source: medRxiv

DOI: 10.64898/2026.02.11.26346092