LONG-TERM OUTCOMES IN ADULT SURVIVORS OF CHILDHOOD OPTIC PATHWAY GLIOMAS

Abstract AIMS Optic pathway gliomas (OPGs) are low-grade gliomas whose clinical course during childhood is well- characterized, yet long-term outcomes in adulthood (> 16 years old) at and following transition from paediatric care remain underexplored. This study represents the largest U.K. series of adult survivors of childhood OPGs and aims to evaluate key clinical, endocrinological, visual, cognitive, and oncological outcomes. METHODS A multicentre retrospective cohort study was conducted on transitioned childhood OPG patients. Clinical data were collected telephonically and from electronic medical records, since database inception to present including demographic characteristics, neurofibroma status, and survival outcomes. Where available, long-term follow- up data were obtained on endocrine status, ophthalmological assessments, cognitive evaluations, and oncolog- ical status (recurrence or stable disease). RESULTS 84 (47 female) patients were identified in whom an OPG was confirmed histopathologically during childhood and had survived to adulthood who at least partly had accessible outcome data. The mean age of the cohort up to present or time of death was 24.2 (range: 16.3 – 41.5 years). 38% of the patients had a concurrent diagnosis of neurofibromatosis. At the point of adult transition, 48% were being treated for endocrine deficiencies, 18% had partial or complete blindness, 6% had actively progressive disease and 31% had a neurocognitive deficit. CONCLUSION Long-term adult follow-up of transitioned childhood OPG patients reveals significant ongoing medical, visual, cognitive, and oncological burdens. This study underscores the necessity of comprehensive, multidisciplinary follow-up protocols to optimize outcomes and quality of life for this vulnerable population. Further work seeks to evaluate clinical and logistical outcomes beyond the point of transition.