Transition from pediatric to adult care in a Japanese cohort of childhood-onset epilepsy: prevalence of epileptic syndromes and complexity in the transition

Seizure. 2021 May:88:1-6. doi: 10.1016/j.seizure.2021.03.017. Epub 2021 Mar 19.

Abstract

Aim: We retrospectively examined patients with childhood-onset epilepsy who transitioned from pediatric to adult care to reveal the clinical characteristics and evaluate the complexity of transitioning.

Methods: The subjects were 220 patients (89 males, 131 females) who had been treated at our pediatric epilepsy clinic and had transferred to adult care between 2014 and 2018 without attending a transition clinic or program. The demographic data of the patients were retrospectively analyzed.

Results: The ages at transition ranged from 15 to 54 years (median: 27 years old). There were 91 patients with focal epilepsies (FEs) and 129 patients with generalized epilepsies [genetic generalized epilepsy (GGE) n = 30, generalized epilepsy of various etiologies (GEv) n = 99]. A most frequent epileptic syndrome was temporal lobe epilepsy followed by frontal lobe epilepsy in FEs, GTCS only followed by juvenile myoclonic epilepsy in GGE and Lennox-Gastaut syndrome followed by Dravet syndrome in GEv. At the age of transition, a total of 77 of the 96 patients with developmental and epileptic encephalopathies (DEE) had pharmacoresistant seizures, which was positively correlated with a late transition age (P≤0.05). More than monthly seizures and greater than moderate disabilities were noted in 45% and 55% of the patients, respectively.

Conclusion: The patients with childhood-onset epilepsy transitioned to adult care from the hospital-based pediatric epilepsy clinic were characterized by generalized>focal epilepsy, a frequent complication of DEE, more than monthly seizures, and worse than moderate intellectual disabilities. The complication of DEE made a smooth transition difficult and delayed the transition age.

Keywords: Childhood-onset epilepsy; Developmental and epileptic encephalopathies; Epileptic syndromes; ILAE 2017 classification of epilepsies; Transition.

MeSH terms

  • Adolescent
  • Adult
  • Child
  • Electroencephalography
  • Epileptic Syndromes*
  • Female
  • Humans
  • Japan / epidemiology
  • Male
  • Middle Aged
  • Prevalence
  • Retrospective Studies
  • Spasms, Infantile*
  • Transition to Adult Care*
  • Young Adult