Cohort Profile: The Adolescent and Young Adult Tracking Engagement and Management Skills (AYA TEAMS) longitudinal cohort of childhood cancer survivors in the United States
11 affiliations
- 1Division of Oncology, Children's Hospital of Philadelphia, Philadelphia, Pennsylvania, United States of America.
- 2Division of Behavioral Medicine & Clinical Psychology, Patient & Family Wellness Center, Cancer and Blood Diseases Institute, Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio, United States of America.
- 3Center for Biobehavioral Health, Nationwide Children's Hospital Research Institute, Columbus, Ohio, United States of America.
- 4Cancer and Blood Disease Institute, Children's Hospital Los Angeles, Los Angeles, California, United States of America.
- 5Perelman School of Medicine, University of Pennsylvania, Philadelphia, Pennsylvania, United States of America.
- 6School of Health Professions, University of Texas - Medical Branch, Galveston, Texas, United States of America.
- 7School of Nursing, University of Pennsylvania, Philadelphia, Pennsylvania, United States of America.
- 8Department of Pediatrics, University of Cincinnati College of Medicine, Cincinnati, Ohio, United States of America.
- 9Division of Oncology, Cancer and Blood Diseases Institute, Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio, United States of America.
- 10USC Norris Comprehensive Cancer Center, Los Angeles, California, United States of America.
- 11Department of Pediatrics, The Ohio State University College of Medicine, ColumbusOhio, United States of America.
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 (treated in a pediatric oncology setting), at least 2 years off-treatment, 5 years since diagnosis, engaged with the participating pediatric health care system (any department/specialty) 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 [Mean 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 study 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.
Related
- Behavior Change Interventions to Promote Healthy Lifestyles Among Adolescent and Young Adult Childhood Cancer Survivors: A Scoping Review.
- Lifestyle Behaviors and Physical Health in Canadian Childhood, Adolescent, and Young Adult Cancer Survivors
- Long-term endocrine and reproductive outcomes in female adolescent and young adult survivors after hematopoietic stem cell transplantation for hematological malignancies during childhood or adolescence
- Risk of subsequent primary melanoma in 68 002 five-year survivors of childhood and adolescent cancer in Europe: the PanCareSurFup cohort study
- Neighborhood disadvantages and longitudinal progression of multimorbidity among adult survivors of childhood cancer: a single-center St. Jude Lifetime Cohort Study in the U.S.
BibTeX
@article{kingdowling2026cohort,
title = {{Cohort Profile: The Adolescent and Young Adult Tracking Engagement and Management Skills (AYA TEAMS) longitudinal cohort of childhood cancer survivors in the United States}},
author = {Sara King-Dowling and Kelsey Woodard and Haley Faust and Sarah Drake and Lina Gov and Dava Szalda and Kemar V Prussien and Jill P Ginsberg and Wendy Hobbie and Carole A Tucker and Lamia P Barakat and Janet A Deatrick and Yimei Li and Karen C Burns and Kathryn Nielsen and Victor Flores and Nithya Ramaswamy and Margaret Jankowski and Bridget O'Hagan and Anneliese Wilkins and David R Freyer and Ahna Pai and Lisa A Schwartz},
journal = {PLOS One},
year = {2026},
month = nov,
doi = {10.1371/journal.pone.0361100},
url = {https://doi.org/10.1371/journal.pone.0361100},
note = {CC BY},
}
RIS
TY - JOUR
TI - Cohort Profile: The Adolescent and Young Adult Tracking Engagement and Management Skills (AYA TEAMS) longitudinal cohort of childhood cancer survivors in the United States
AU - Sara King-Dowling
AU - Kelsey Woodard
AU - Haley Faust
AU - Sarah Drake
AU - Lina Gov
AU - Dava Szalda
AU - Kemar V Prussien
AU - Jill P Ginsberg
AU - Wendy Hobbie
AU - Carole A Tucker
AU - Lamia P Barakat
AU - Janet A Deatrick
AU - Yimei Li
AU - Karen C Burns
AU - Kathryn Nielsen
AU - Victor Flores
AU - Nithya Ramaswamy
AU - Margaret Jankowski
AU - Bridget O'Hagan
AU - Anneliese Wilkins
AU - David R Freyer
AU - Ahna Pai
AU - Lisa A Schwartz
PY - 2026
DA - 2026/11/02
JO - PLOS One
DO - 10.1371/journal.pone.0361100
UR - https://doi.org/10.1371/journal.pone.0361100
AB - 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 (treated in a pediatric oncology setting), at least 2 years off-treatment, 5 years since diagnosis, engaged with the participating pediatric health care system (any department/specialty) 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 [Mean 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 study 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.
SN - 1932-6203
ER -