Abstracts

Rationale: Many pediatric patients with epilepsy require treatment beyond the pediatric age. These patients require a transition to adult epilepsy centers. Currently, many centers worldwide run epilepsy transition programs. However, in Korea, a standardized protocol does not exist, and basic data that are required to establish transition programs are not available. We aimed to assess the recognition of patients and epilepsy care providers requiring transition.

Methods: We surveyed the recognition of transition in patients or their parents, pediatric neurologists, and adult epileptologists. Patients with epilepsy who were older than 15 years of age, receiving treatment, and visited a pediatric epilepsy clinic between March 2019 and May 2020 were surveyed. If patients were unable to participate because of severe mental retardation or disablement, their caregivers provided responses to the survey. Pediatric neurologists and adult epileptologists who were treating patients with epilepsy at the time of this study were surveyed by online via the Korean Epilepsy Society between September 2020 and October 2020.

Results: A total of 94 patients or parents participated in the survey. Approximately half of them (44.7%) did not wish to transition. Emotional dependence was the most common reason for not wishing to transition (53.1%). Most patients or parents (52.1%) responded that an appropriate age of transition is >20 years. The proportions of patients who agreed to undergo re-evaluations of their diagnosis and psychosocial problems were 60.6% and 74.5%, respectively. A total of 100 experts were surveyed (52 adult epileptologists and 48 pediatric neurologists). Adult epileptologists were not familiar with some pediatric epilepsy syndromes, such as Lennox–Gastaut syndrome, Dravet syndrome, genetic/metabolic epileptic syndromes, and neurocutaneous syndromes. Regarding the age of transition, adult epileptologists responded that a younger age (18 years) is more appropriate than that suggested by pediatric neurologists (20 years) (p=0.00).

Conclusions: This study shows that pediatric patients with epilepsy have a somewhat negative perspective on the transition to adult epilepsy centers. Thus, it is important to improve patients’ understanding of transition. There are differences in recognition among patients or their parents and adult and pediatric epilepsy care providers. These perspectives must be reflected in epilepsy transition programs.

Funding: Please list any funding that was received in support of this abstract.: This work was supported by research fund of Chungnam National University (2020-0636-01).