Delphi consensus finding on paediatric-adult transition: results from the epilepsy transition working group of the italian league against epilepsy (LICE).

Abstract

Purpose and rationale: The care for paediatric and transitional-age epilepsy patients has expanded significantly, addressing the diverse needs of patients with self-limiting to lifelong conditions. Approximately one-third of patients with childhood-onset epilepsy remain dependent on parental care, with transition influenced by factors such as seizure frequency, drug resistance, comorbidities, and developmental disabilities. The Italian League Against Epilepsy (LICE) initiated a Delphi consensus to establish common guidelines for effective transition practices.

Methods: The consensus process included a literature review, thematic analysis, and iterative surveys using the Delphi Technique. The surveys involved 15 clinicians from LICE centres, forming the Epilepsy Transition Working Group (ETWG), and external experts. The surveys gathered expert opinions, with questions designed from evidence-based thematic areas.

Results: The Delphi rounds revealed several findings. Effective pediatric-to-adult transition in epilepsy requires a multidisciplinary approach, including child and adolescent neuropsychiatrists, continuous training for healthcare providers, and active involvement of caregivers. The transition process should start at variable ages depending on the type of epilepsy and associated comorbidities, and it should mitigate risk factors and address psychological stress for patients and caregivers. Items related to transition tools did not reach consensus, highlighting the need for standardized screening questionnaires and measurable outcomes.

Conclusions: This study emphasizes the necessity of an organized transition model involving various specialists and a tailored timeline. The consensus underscores the importance of caregiver involvement and unified educational curricula for all epileptologists to ensure effective care transition. The ETWG is building and improving a network of epilepsy centres to implement the organizational model derived from this study.