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

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.

Health Care Transitions Among Adolescents and Young Adults With Cancer

“…Notably, much of the literature on transition in AYA survivors, and associated barriers, has emerged from studies of childhood and adolescent cancer survivors entering adulthood. 35,63,66,[82][83][84][85][86][87][88][89][90] Beyond single-center, disease-specific reports, 91,92 and the documented discomfort of adult PCPs in following long-term survivors, [93][94][95] there are very limited data available on transition of young adult survivors who move directly from acute oncologic care to longitudinal care by the primary care provider. Additional work is needed to elucidate successful approaches to transition, as well as unique barriers that need to be overcome, in this population.…”

“…Transition practices at each of these junctures vary widely across treating institutions, 35,36 with recent surveys showing that very few providers use standardized transition assessments 37 or plans. Each of these nuances represents an opening for discontinuity or loss to follow-up of care and subsequent nonadherence to recommend screening guidelines and therefore a potential missed opportunity for early detection, prevention, and treatment of possible late effects.…”

Children's Oncology Group 2023 blueprint for research: Cancer care delivery research

“…48 Most recently, the US Preventive Services Task Force recommends screening youth for anxiety and depression in primary care settings with "systems in place to ensure accurate diagnosis, effective treatment, and appropriate follow-up." 49,50 These guidelines and recommendations are relevant to pediatric cancer care delivery as: (i) pediatric cancer centers are often the main healthcare setting for patients and typically oversee the multidisciplinary healthcare required to support children and AYAs with cancer from diagnosis through long-term follow-up 51,52 ; and (ii) many pediatric oncology patients view their cancer center as their medical home and report feeling disconnected from primary care both during and after treatment for childhood cancer. [53][54][55] Despite increased risks and repeated clinical practice recommendations, only 25% of pediatric oncology programs offer ongoing psychosocial assessments, and less than half of programs use validated patient-reported outcomes to assess survivors' psychosocial functioning.…”

“…Additionally, the American Academy of Pediatrics recommends regularly screening of families for unmet basic needs (food, housing, heat) with linking to resources in order to maximize child clinical and developmental outcomes 48 . Most recently, the US Preventive Services Task Force recommends screening youth for anxiety and depression in primary care settings with “systems in place to ensure accurate diagnosis, effective treatment, and appropriate follow‐up.” 49,50 These guidelines and recommendations are relevant to pediatric cancer care delivery as: (i) pediatric cancer centers are often the main healthcare setting for patients and typically oversee the multidisciplinary healthcare required to support children and AYAs with cancer from diagnosis through long‐term follow‐up 51,52 ; and (ii) many pediatric oncology patients view their cancer center as their medical home and report feeling disconnected from primary care both during and after treatment for childhood cancer 53–55 …”

Who and What Did We Miss in Childhood Cancer Survivor Research?

“…15,16 Research on CCS transitioning to adult care has focused on psychological and physical readiness and the effects of such transitions on patients' quality of life. 16 Research on CCS has been conducted primarily by pediatric healthcare professionals. However, collaborative research by pediatric and adult healthcare professionals is necessary.…”