Transitioning from Pediatric to Adult Epilepsy Care

Developmental and epileptic encephalopathies (DEEs) are a group of rare epilepsies characterized by seizures and neurodevelopmental regression or delay, often presenting in infancy and frequently resistant to conventional antiseizure medications (ASMs). Even when seizure control improves, neurodevelopmental impairments may persist or progress, necessitating long-term multidisciplinary care and active involvement from families in care coordination. Transition from pediatric to adult care may require individualized planning that addresses both seizure management and broader medical, cognitive, educational, and psychosocial needs of patients with DEEs.¹

In this NeurologyLive® Special Report video program, Joseph Sullivan, MD, the director of the Pediatric Epilepsy Center of Excellence at the University of California San Francisco, discussed key considerations in the transition of care from pediatric to adult epilepsy management. He highlighted strategies to support patients during this process, including effective communication between care teams. Sullivan also addressed the role of genetic testing and the importance of reassessing treatment plans over time. He discussed approaches to optimizing ASMs and the potential use of surgical or neuromodulation interventions. Additionally, he emphasized the importance of reviewing diagnoses and treatments over time to ensure care stays aligned with evolving clinical knowledge.

In this first episode, Sullivan highlighted the transition of care as a growing clinical priority, particularly for pediatric epilepsy providers who follow patients into young adulthood. He emphasized the importance of introducing transition discussions well before adulthood to avoid abrupt transfers to adult care. At his institution, he noted that this process includes early conversations with families, coordination in the same health system, and direct communication with adult epilepsy providers. Sullivan noted that although adult clinicians are well equipped to manage complex epilepsy, sharing psychosocial context and family dynamics may be critical to ensuring continuity and easing the transition for patients with DEEs.