Organizational and behavioral models in the management of patients with developmental and epileptic encephalopathy, Lennox-Gastaut syndrome and Dravet syndrome in Italy: a focus on the transition from pediatric to adult care.

ABSTRACT:

Introduction

Developmental and Epileptic Encephalopathies (DEEs) are rare and complex conditions characterized by drug-resistant seizures and severe neurocognitive impairments. Management models for these disorders are often inconsistent, and the transition of care from pediatric to adult services represents a critical phase. This transition is frequently managed in an unstructured manner, leading to significant consequences for care continuity and the quality of life of both patients and their families.

Methods

A cross-sectional observational survey was conducted among specialists (neurologists and pediatric neuropsychiatrists) and caregivers of patients with DEEs, particularly those diagnosed with Lennox-Gastaut Syndrome (LGS). The aim was to analyze organizational models,

SUBMITTER: Di Bonaventura C 

PROVIDER: S-EPMC12634588 | biostudies-literature | 2025

REPOSITORIES: biostudies-literature