Epilepsy transition of care: Lessons and insights from an academic adult-based epilepsy transition program in the US

Approximately half of children with epilepsy continue to have seizures as adults thus requiring transition from pediatric to adult epilepsy care. We developed an adult-based epilepsy transition program (ETP) in an academic institution in the US to meet these patients' needs.

We retrospectively analyzed our ETP, which operated from July 2022 to July 2025, examining its programmatic successes and challenges across development, implementation, and evolution. We also reviewed all patients whose initial ETP visit occurred between July 1, 2022, and January 1, 2025, collecting healthcare delivery metrics and patient-level clinical data including demographics, clinical characteristics, insurance profiles, referral sources, visit logistics, and clinical recommendations from the first ETP encounter.

A total of 135 patients were included (median 21 years). Roughly a third of patients had drug-resistant epilepsy, almost half were on two or more antiseizure medications, and more than half had at least one neuropsychiatric comorbidity. The first ETP clinic visits had a median billable time of 90 min (range 40-150), and 41% had trainee participation. Following the initial encounter, brain MRI was ordered for 43% of patients, routine EEG for 38%, epilepsy monitoring unit evaluation for 20%, and genetic testing for 34%. Referral to specialty services were made for 16% of patients.

Our study highlights challenges and successes of implementing an adult-based ETP in the US. Challenges included resource and infrastructure limitations, healthcare system structural barriers, and care coordination obstacles. Successes included clinical opportunities for care reassessment with revenue potential, patient-centered transition approach, and educational opportunities for neurology trainees.