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

Carlo Di Bonaventura^1,2Antonietta Coppola³Giancarlo Di Gennaro⁴Lucio Corsaro⁵Emanuele Corsaro⁵Lorena Trivellato⁵Gianluca Vaccaro^5,6*

• ¹Policlinico Umberto I, Rome, Italy
• ²Sapienza University of Rome, Rome, Lazio, Italy
• ³Epilepsy Center, University Hospital Federico II, Naples, Italy
• ⁴Epilepsy Center, IRCCS Neuromed, Pozzilli (IS), Italy
• ⁵BHAVE, Rome, Italy
• ⁶Sociologist UO Education and Health Promotion, Asp Catania, Catania, Italy

Developmental and Epileptic Encephalopathies (DEEs) are rare and complex conditions characterized by drug-resistant seizures and severe neurocognitive impairments. The management models for these disorders tend to be inconsistent, and the transition of care from pediatric to adult services is a critical phase, often managed in an unstructured manner, resulting in significant implications for the continuity of care and the quality of life for both patients and their families. A cross-sectional observational survey was conducted among specialists (neurologists and pediatric neuropsychiatrists) and caregivers of patients with DEEs, particularly those with Lennox-Gastaut Syndrome (LGS). The aim was to analyze organizational models, transition pathways, and patient and caregiver experiences, identifying gaps in care and comparing these models with those of another DEEs, Dravet Syndrome (DS). The survey involved 47 physicians and 30 caregivers, revealing significant fragmentation in management models and the absence of standardized transition pathways for 54% respondents. The transition of LGS patients to adult care centers is often left to individual families, with an adult center dropout rate of 40% for LGS, similar to that observed in DS patients (38%). Caregivers reported stress, organizational difficulties, and a perceived decline in the quality of adult care and the majority of caregivers (53%) reported receiving no support services following diagnosis. The lack of standardization in transition pathways is a critical barrier to the continuity of care for DEEs/LGS patients. There is a need to develop structured models based on best practices, enhance caregiver support, and promote a multidisciplinary approach to ensure better quality of life and effective management of the disease in adulthood.