Abstract, originally published in Epilepsy Research
Introduction: Dravet syndrome (DS) is still seen as a “pediatric disease”, where patients receive excellent care in pediatric centers, but care is less than optimal in adult health care systems (HCS). This creates a barrier when young adults need to leave the family-centered pediatric system and enter the adult, patient-centered HCS. Here we create a guide to help with the transition from pediatric to adult for patients with DS.
Methods: Experts in Dravet syndrome flagged the main barriers in caring for adults with DS and created a 2-page transition summary guide based on their expertise and a literature review.
Results: The 2-page guide addresses: DS diagnosis in children and adults; clinical manifestations, including the differences in seizures types and frequencies between children and adults with DS; the natural history of intellectual disability, behavior, gait, motor disorders and dysautonomia; a review of optimal treatments (including medications not commonly used in adult epilepsy settings such as stiripentol and fenfluramine), as well as emergency seizure management; avoidance of triggers, preventive measures, and vaccine administration in adults with DS.
Conclusion: Several young adults with Dravet syndrome (DS) are still followed by their child neurologist. This 2-page transition guide should help facilitate the transition of patients with DS to the adult healthcare system and should be given to families as well as adult health care providers that may not be familiar with DS.