Health-care transitions for young people living beyond childhood and adolescent cancer: recommendations from the EU–CAYAS–NET consortium

Abstract

Childhood and adolescent cancer survivors (age at diagnosis: 0–21 years) face increased risk for long-term health complications and less favourable outcomes in terms of functioning and social participation. Moreover, they often experience inadequate health-care transitions to appropriate services after leaving paediatric or adolescent services, while the prevalence and severity of late effects increase as they become adults. To address transition challenges, we developed evidence-based recommendations as part of the European Network of Youth Cancer Survivors project with the goal to improve health-care transitions to both long-term survivorship and adult care, ensuring continuity and addressing survivors’ unique needs. Using evidence-based methods, an international and multidisciplinary guideline panel developed a clinical practice guideline for health-care transitions. Patient representatives were included at all steps of the development process. The guideline panel systematically reviewed data from PubMed from Jan 1, 1990, to April 8, 2025, and graded the evidence with the GRADE methodology. In addition, existing guidelines and perspectives from patients, parents, and health-care providers were considered when formulating recommendations. Of 2538 citations identified, 86 articles met the inclusion criteria, focusing on health-care transitions for cancer survivors up to age 21 years at diagnosis or for patients with chronic conditions (eg, diabetes and asthma) to extrapolate insights from these populations. The quality of evidence varied from very low to moderate. Unique needs and preferences were captured, ensuring a comprehensive and patient-centred approach to the recommendations. In total, 44 strong recommendations were formulated for health-care transitions of childhood and adolescent cancer survivors. We integrated existing evidence and multistakeholder expertise and developed actionable recommendations that support smooth transitions for childhood and adolescent cancer survivors and improve their lives as adults. Implementing this guideline will enhance the quality of care and improve quality of life by addressing the specific health-care transition needs of this vulnerable population.