Transition from adolescence to adulthood: Dedicated health services for young people with epilepsy in Italy

Objective: The transition from pediatric to adult healthcare services is a particularly sensitive phase for young adults with chronic conditions, including epilepsy. In European countries, there is a lack of standardized protocols for an appropriate and detailed transition path. This study aimed to investigate the experiences of both patients and clinicians during the transition process to adulthood, with the goal of contributing to a nationwide consensus document to standardize practices across Italy. Methods: This multicentric, observational, prospective, qualitative study included interviews with young people who turned 18 between 2018 and 2022 belonging to four regional epilepsy centers. In addition, pediatric and adult neurologists completed questionnaires addressing epilepsy type, comorbidities, daily life impact, and details of the transition process. Results: Thirty-seven patients (92.5%) participated in the study, 34 of them began the transition process, and the remaining three included two patients who continued to receive care within pediatric services and one patient who was lost to follow up. At the time of the interview, 30 (88%) patients were still under the care of the public adult service, while one returned to the pediatric service, one was followed by a private epileptologist, and two were not under any specialist care. The study revealed significant variability in the duration of the preparatory phase, the time elapsed between referral and access to adult services, and the methods of communication/reporting. The caregivers of patients with epilepsy and associated disabilities reported greater difficulty accessing referrals for multidisciplinary and specialized care for rare or complex epilepsies in adulthood. Significance: While most patients successfully transitioned, the absence of uniform, structured protocols, in particular for patients with disabilities, created a significant difference in managing transition. The study strongly underscores the urgent need for standardized, shared national guidelines to ensure a consistent, equitable, and effective transition from pediatric to adult epilepsy care across Italy.