Transition from pediatric to adult care among patients with epilepsy: Cross‐sectional surveys of experts and patients in Korea

OBJECTIVES: Many pediatric patients with epilepsy require treatment beyond the pediatric age. These patients require transition to an adult epilepsy center. Currently, many centers worldwide run epilepsy transition programs. However, a standardized protocol does not exist in Korea. The basic data required to establish a transition program are also unavailable. We aimed to assess the status and perceptions of patients and epilepsy care providers on transition. METHODS: To assess the status of epilepsy transition, we retrospectively collected data from patients with epilepsy older than 18 years who visited our pediatric epilepsy clinic between March 1990 and July 2019. To assess the perception of transition, we surveyed patients, parents, pediatric neurologists (PN), and adult epileptologists (AE). RESULTS: In a retrospective chart review, 39 of 267 (14.6%) patients visited the adult epilepsy clinic after consulting a pediatric neurologist, and three patients returned to the pediatric center. The average patient age at transition was 23.29 ± 5.10 years. A total of 94 patients or their guardians and 100 experts participated in the survey. About half of the patients or guardians (44.7%) did not want to transition and emotional dependence was the commonest reason. Most patients (52.1%) thought that the appropriate age of transition was above 20 years. PNs had greater concerns about patients' compliance than AEs. Regarding the age of transition, AEs believed that a younger age (18 years) was more appropriate than PNs (20 years). SIGNIFICANCE: This study describes difficulties in the transition from pediatric to adult epilepsy centers without appropriate support. There were differences in perspectives among patients, parents, and adult and pediatric epilepsy care providers. This study can assist in creating a standardized protocol in Korea.