Vision-related quality-of-life in pediatric primary brain tumor patients

PURPOSE: Brain tumors are the leading cause of death from childhood cancer. Although overall survival has improved due to earlier detection, better therapies, and improved surveillance, visual dysfunction and impaired vision-related quality-of-life (VR-QOL) are often unrecognized in children. This project investigated VR-QOL in pediatric brain tumor patients. METHODS: We evaluated visual impairment and quality-of-life (QOL) in a quality improvement project at one tertiary care center. Patients ≤18, greater than 6 months from diagnosis of brain tumor, excluding intrinsic anterior visual pathway tumors, underwent standardized neuro-ophthalmologic examination. Health-related QOL (HR-QOL) [PedsQL Brain Tumor Module] and VR-QOL questionnaires [CVFQ (Children’s Visual Function Questionnaire) in children ˂8, and EYE-Q in children 8–18] were obtained from patients and parents. RESULTS: Among 77 patients, craniopharyngiomas (n=16, 21%) and astrocytomas (n=15, 20%) were the most common tumors. Among 44/77 (57%) visually impaired children, 7 (16%) were legally blind. Eye-Q median score was 3.40 (interquartile range 3.00–3.75), worse than average scores for normal children. Eye-Q score decreased 0.12 with every 0.1 increase in logMAR visual acuity [p<0.001]. Patients who were legally blind had a significantly lower Eye-Q score than those who were not (0.70 vs. 3.44 [p<0.001]). Cognitive HR-QOL scores decreased 1.3 for every 0.1 increase in logMAR visual acuity [p=0.02]. CONCLUSIONS: Pediatric brain tumor patients’ vision, HR-QOL, and VR-QOL were often severely affected even when tumors were considered cured. Visual acuity and legal blindness correlated with VR-QOL. Systematic neuro-ophthalmologic examinations in pediatric primary brain tumor patients are necessary to facilitate early preventative and corrective ophthalmologic interventions.