Vocational and Educational Outcomes in Adults With Sturge–Weber Syndrome: Preliminary Results From a Clinical Needs Assessment

ABSTRACT Objective The clinical presentation of Sturge–Weber syndrome (SWS) is highly variable, with seizures during infancy and co‑occurring neurodevelopmental conditions commonly reported. Although these features are known to affect childhood functioning, their relationship to adult vocational and educational outcomes remains poorly understood. This study examined the impact of early seizure history, self‐reported current cognitive and social difficulties, and current adult neurological functioning—as measured by the Sturge–Weber Syndrome Neurological Rating Scale (SWS‑NRS) on vocational and educational outcomes in adults with SWS. Methods A cross‑sectional, web‑based clinical needs assessment incorporating the Vocational and Educational Index (VEI) was distributed to all adults with SWS seen at our center since 2019 ( N = 59). Twenty research‐consented participants responded and were included in the data analysis (34% response rate). Results Higher VEI scores were strongly associated with better (lower) SWS‑NRS ( r s = −0.71, p < 0.001), and post hoc analysis revealed an association between hemiparesis and lower VEI score. Moreover, the presence of one or more self‑reported current cognitive or social difficulties was associated with poorer vocational and educational outcomes ( p = 0.003). Conclusions These preliminary findings suggest that adult neurological functioning and co‑occurring cognitive or social concerns are important correlates of vocational and educational outcomes in adults with SWS. Early identification and longitudinal monitoring of neurodevelopmental comorbidities (particularly for individuals with both SWS and hemiparesis) may inform targeted interventions and transition planning. Larger studies are needed to further clarify predictors of adult functional outcomes in this rare population.