Complete Title: Quality of Life in Children with Sturge-Weber Syndrome

Abstract Purpose To assess utilization of the National Institutes of Health (NIH) Quality of Life in Neurological Disorders (Neuro-QoL) short forms in pediatric patients with Sturge-Weber syndrome (SWS), a rare, neurovascular disorder, which frequently results in seizures, brain atrophy, calcification, and a range of neurological impairments. Methods Subjects were seen clinically and consented for research. All 22 patients filled out the Pediatric Neuro-QoL. The Neuro-QoL subscores were converted to T-scores to compare to the referenced control population. Twenty-one participants also filled out the BVMC Database Questionnaire, containing data pertaining to SWS-related medical history, medications, comorbidities, and family history. All data were analyzed with a significance threshold of p Results Cognitive function quality of life was significantly lower (p Conclusion The results suggest targeting cognitive function Neuro-QoL in treatment trials and reiterate the prognostic value of early seizure onset. Additionally, sex-related differences were noted which should be further studied.