The transition from pediatric to adult age in patients with Dravet Syndrome: A study on the current management pathways and the challenges ahead

Dravet Syndrome (DS) is an infantile onset drug-resistant developmental and epileptic encephalopathy, often associated with comorbidities including intellectual disability, behavioral disorders and gait problems. Epileptic seizures usually begin in the first year of life and persist into adulthood, resistant to antiseizure medications. Within the complex care pathway faced by these patients and their families, the transition from pediatric care centers to adult centers represents a critical phase of the patient's journey. If not managed optimally, transition can have significant repercussions on the quality of care and patient management. We conducted a mixedmethods investigation, involving a quantitative survey of 54 neurologists and neuropsychiatrists from 28 national reference centers, and a qualitative survey with 5 specialists and 3 caregivers of patients with DS. The study aimed to investigate the transition of patients from child neurologist clinics to adult clinics exploring management methods, challenges, and unmet needs of patients and their caregivers. The results indicate that transitions to adult centers are currently heterogeneous and often unstructured, with significant implications in terms of the quality of care provided. Particularly, structured transition programs are available in only 70% of centers, and many patients remain in pediatric care beyond adulthood due to perceived better care quality and stability concerns. Additionally, around 19% of patients abandon adult care centers within a year of transition. In order to improve the quality of care and the quality of life for patients with this syndrome, it is essential to listen to the requests of their caregivers, including continuity in patient management, psychological support and planning for the future of their loved ones. The overall fragmented nature of transition strategies highlights the need for initiatives to provide greater structure and continuity in care pathways.