Approach to Survivorship Care in Pediatric, Adolescent and Young Adult Brain Tumor Patients: A Scoping Review

Background Pediatric, adolescent and young adult brain tumor survivors face a myriad of physical and emotional health challenges due to the effects of their tumors and the treatments they receive. Survivors experience worse neurocognitive, psychosocial and general health outcomes, and often receive fragmented care from seeing multiple sub-specialists. With the goal of informing best practices on survivorship care, we reviewed and critically appraised the available evidence and guidelines for survivorship care in child, adolescent and young adult (CAYA) brain tumor patients. Methods We systematically identified clinical practice guidelines, consensus statements, position papers, and formal recommendations addressing surveillance or long-term follow-up care in CAYA survivors of CNS tumors published up to April 18, 2026. Extracted data were synthesized descriptively and organized by surveillance domain. Areas of concordance and discordance across guidelines were identified, with particular attention to variability in recommended surveillance strategies, frequency, and evidence grading systems. Results We identified 24 relevant clinical practice guidelines, consensus statements, position papers, and formal recommendations addressing surveillance or long-term follow-up care in CAYA brain tumor survivors. We summarized the data descriptively and organized by surveillance domain, including recommendations for surveillance for secondary malignancy, medical complications, neurologic complications, education, employment, psychosocial and behavioral outcomes as well as supportive care. Conclusions Our study discusses current practices in regard to surveillance and long-term follow-up care in CAYA survivors of CNS tumors. We also highlight areas of uncertainty and provide recommendations for future studies to address knowledge gaps in terms of surveillance and clinical management for this patient population.