{
  "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.",
  "abstract_shown": true,
  "affiliations": [
    "Division of Oncology, Children's Hospital of Philadelphia, Philadelphia, Pennsylvania, United States of America.",
    "Division 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.",
    "Center for Biobehavioral Health, Nationwide Children's Hospital Research Institute, Columbus, Ohio, United States of America.",
    "Cancer and Blood Disease Institute, Children's Hospital Los Angeles, Los Angeles, California, United States of America.",
    "Perelman School of Medicine, University of Pennsylvania, Philadelphia, Pennsylvania, United States of America.",
    "School of Health Professions, University of Texas - Medical Branch, Galveston, Texas, United States of America.",
    "School of Nursing, University of Pennsylvania, Philadelphia, Pennsylvania, United States of America.",
    "Department of Pediatrics, University of Cincinnati College of Medicine, Cincinnati, Ohio, United States of America.",
    "Division of Oncology, Cancer and Blood Diseases Institute, Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio, United States of America.",
    "USC Norris Comprehensive Cancer Center, Los Angeles, California, United States of America.",
    "Department of Pediatrics, The Ohio State University College of Medicine, ColumbusOhio, United States of America."
  ],
  "article_type": "Research Article",
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  "author_total": 23,
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      "name": "Sara King-Dowling",
      "orcid": "0000-0003-3670-8425"
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      "name": "Kelsey Woodard"
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      "name": "Haley Faust"
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      "name": "Sarah Drake"
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    {
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      "name": "Lina Gov",
      "orcid": "0009-0001-4076-3198"
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      "name": "Dava Szalda"
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      "name": "Kemar V Prussien"
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      "name": "Jill P Ginsberg",
      "orcid": "0000-0001-7412-2017"
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    {
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      "name": "Wendy Hobbie"
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      "name": "Carole A Tucker"
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        4
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      "name": "Lamia P Barakat"
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      "name": "Janet A Deatrick"
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      "name": "Yimei Li"
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      "name": "Karen C Burns"
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      "name": "Kathryn Nielsen"
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    {
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      "name": "Victor Flores"
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      "name": "Nithya Ramaswamy"
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    {
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      "name": "Margaret Jankowski"
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    {
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      "name": "Bridget O'Hagan"
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      "name": "Anneliese Wilkins"
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      "name": "David R Freyer"
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    {
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        10
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      "name": "Ahna Pai"
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    {
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      "name": "Lisa A Schwartz"
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  "bibtex": "https://research.draconitic.com/paper/e6xbgb28a6a12.bib",
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  "doi": "10.1371/journal.pone.0361100",
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  "native_subjects": [
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      "heading",
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  "pmcid": "PMC13726922",
  "pmid": "42970590",
  "published": "2026-11-02",
  "publisher": "Public Library of Science",
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  "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",
  "title_text": "Cohort Profile: The Adolescent and Young Adult Tracking Engagement and Management Skills (AYA TEAMS) longitudinal cohort of childhood cancer survivors in the United States",
  "type": "peer-reviewed",
  "updated_at": "2026-11-06T12:22:45Z",
  "url": "https://research.draconitic.com/paper/e6xbgb28a6a12",
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