Transition practices for survivors of childhood cancer: a report from the Children's Oncology Group

• Authors: Jordan Marchak, Emory University; Karim T Sadak, University of Minnesota Masonic Children’s Hospital and Cancer Center; Karen Effinger, Emory University; Regine Haardörfer, Emory University; Ngoc-Cam Escoffery, Emory University; Karen E Kinahan, Northwestern University; David R Freyer, Childrens Hosp Los Angeles; Eric J Chow, Seattle Childrens Hospital; Ann Mertens, Emory University
• Journal Title: JOURNAL OF CANCER SURVIVORSHIP
• Volume: Volume 17, Number 2
• Publisher: SPRINGER | 2023-03-04, Pages 342-350
• Type of Work: Article | Final Publisher PDF
• Publisher DOI: http://doi.org/10.1007/s11764-023-01351-y
• Subjects: Health Sciences, Oncology; Health Sciences, Public Health
• Keywords: Science & Technology; Social Sciences; Life Sciences & Biomedicine; Oncology; Social Sciences, Biomedical; Biomedical Social Sciences; Transition to adult care; Late effects services; Pediatric cancer; Survivorship; HEALTH-CARE TRANSITION; YOUNG-ADULT SURVIVORS; FOLLOW-UP CARE; SELF-MANAGEMENT; PEDIATRIC CARE; READINESS; ADOLESCENT; INTERVENTIONS; RELIABILITY; EXPERIENCES

Abstract

Purpose: Pediatric healthcare systems must support childhood cancer survivors to optimize their transition to adult care. This study aimed to assess the state of healthcare transition services provided by Children’s Oncology Group (COG) institutions. Methods: A 190-question online survey was distributed to 209 COG institutions to assess survivor services, including transition practices, barriers, and implementation of services aligned with the six core elements of Health Care Transition 2.0 from the US Center for Health Care Transition Improvement. Results: Representatives from 137 COG sites reported on institutional transition practices. Two-thirds (66.4%) of site discharge survivors to another institution for cancer-related follow-up care in adulthood. Transfer to primary care (33.6%) was a commonly reported model of care for young adult-aged survivors. Site transfer at ≤ 18 years (8.0%), ≤ 21 years (13.1%), ≤ 25 years (7.3%), ≥ 26 years (12.4%), or when survivors are "ready" (25.5%). Few institutions reported offering services aligned with the structured transition process from the six core elements (Median = 1, Mean = 1.56, SD = 1.54, range: 0–5). The most prevalent barriers to transitioning survivors to adult care were perceived lack of late-effects knowledge among clinicians (39.6%) and perceived lack of survivor desire to transfer care (31.9%). Conclusions: Most COG institutions transfer adult-aged survivors of childhood cancer elsewhere for survivor care, yet few programs report delivering recognized standards for quality healthcare transition programming to support survivors. Implications for Cancer Survivors: Development of best practices for survivor transition is needed to help promote increased early detection and treatment of late effects among adult survivors of childhood cancer.