Transition of patients with childhood onset epilepsy: Perspectives from pediatric and adult neurologists

• Published in: Epilepsy & behavior 2020-03, Vol.104 (Pt A), p.106889-106889, Article 106889
• Main Authors: Nabbout, Rima, Teng, Theo, Chemaly, Nicole, Breuillard, Delphine, Kuchenbuch, Mathieu
• Format: Article
• Language: English
• Subjects: Comorbidities; Intellectual disability; Life Sciences; Obstacles for transition; Recommendation for transition; Structure for transition
• ISSN: 1525-5050; 1525-5069
• DOI: 10.1016/j.yebeh.2019.106889

Transition from pediatric to adult care systems is a major challenge in the management of adolescents with epilepsy. The comparison of pediatric and adult physicians' points of view on this issue is scarcely described. The aim of this study was to understand pediatric and adult neurologists' experience and opinions on transition in epilepsy in France. We investigate the age at which they usually transfer patients, their opinion on the factors that positively or negatively impact transition, on the help provided during this transition period, and their propositions to improve this process. We prepared a targeted questionnaire with two versions, one adapted for neurologists and the other for child neurologists. The questionnaires were diffused through the Reference Centre for Rare Epilepsies, the French Chapter of the League Against Epilepsy, the French Association for Office-based Neurologists, and the French Pediatric Neurology Society. A total of sixty-eight physicians involved mostly in epilepsy care answered this questionnaire: 39 child neurologists and 29 neurologists. Questionnaires were filled at 96.8%. Twenty-six child neurologists followed patients aged over 18 years (70%), and 18 neurologists followed patients under the age of 12 years (66.6%). Cognitive impairment in childhood led significantly to a later transfer to adult care. The major factors believed to delay the transfer were attachment between child neurologists and families as reported in 96.3% by neurologists and in 81.1% by child neurologists, p = 0.07 and lack of adaptation of adult neurology facilities to adolescents especially with intellectual disability (59.3% neurologists, 75.7% child neurologists, p = 0.16). Factors that helped a transfer around 18–19 years were mainly pharmacoresistant epilepsy (71% for neurologists vs. 19% for child neurologists, p 65% of providers) and development of care networks between pediatric and adult care for patients with epilepsy (