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

Abstract

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 < 105) and pregnancy (72% for child neurologists versus 50% for neurologists, p = 0.08). Factors that negatively impacted transition were the lack of information about daily life in adulthood (driving license, contraception, sexuality, carrier guidance, etc.), the weak transition preparation in pediatric system, the lack of knowledge of pediatric epilepsy syndromes, and the lack of global support for patients with intellectual disability and multidisciplinary care needs in adult system. Both groups proposed joint clinics (>65% of providers) and development of care networks between pediatric and adult care for patients with epilepsy (>55%) to improve transition as well as introducing courses on transition. Few physicians were aware of transition and transfer recommendations.Although child and adult neurologists still have some preconceived beliefs, they were able to identify the strengths and weaknesses of both care systems paving the way for proposals to improve transition and transfer of patients with epilepsy from pediatric to adult care.