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Dravet syndrome: A quick transition guide for the adult neurologist
Danielle M Andrade1, Anne T Berg2, Veronica Hood3
1Adult Epilepsy Genetics Program, Division of Neurology, Krembil Brain Institute, Toronto Western Hospital, University of Toronto, Toronto, Canada.
Insights
Transitioning Dravet syndrome (DS) patients to adult care is challenging. This guide aids the move from pediatric to adult healthcare systems, improving care for young adults with DS.
Area of Science:
- Neurology
- Pediatrics
- Healthcare Transition
Background:
- Dravet syndrome (DS) is often viewed as a pediatric condition, leading to suboptimal care for adults within adult healthcare systems.
- The transition from family-centered pediatric care to patient-centered adult healthcare presents significant challenges for young adults with DS.
Purpose of the Study:
- To develop a practical guide for facilitating the transition of care for patients with Dravet syndrome from pediatric to adult healthcare systems.
- To address the specific needs and challenges faced by adults with DS as they navigate adult healthcare.
Main Methods:
- Expert consensus from Dravet syndrome specialists identified key barriers to adult care.
- A comprehensive literature review informed the development of a 2-page transition summary guide.
Main Results:
- The guide details DS diagnosis, clinical manifestations (including age-related differences in seizures), and natural history (intellectual disability, behavior, motor disorders, dysautonomia).
- It covers optimal treatments (e.g., stiripentol, fenfluramine), emergency seizure management, trigger avoidance, preventive measures, and vaccinations for adults with DS.
Conclusions:
- Many young adults with DS remain under the care of pediatric neurologists, highlighting the need for improved adult care integration.
- This transition guide aims to support families and adult healthcare providers in managing Dravet syndrome in adult patients, ensuring continuity and quality of care.
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 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 HCS and should be given to families as well as adult health care providers that may not be familiar with DS.
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