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

Abstract

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 sites 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. Sites 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.