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Sleep in Dravet syndrome: A parent-driven survey
Abigail Van Nuland1, Anna Ivanenko2, Mary Anne Meskis3
1Division of Neurology, Epilepsy Center, Ann & Robert H. Lurie Children's Hospital of Chicago, Chicago, IL, United States.
Seizure
|January 16, 2021
Summary
Young people with Dravet syndrome (DS) experience frequent sleep disruptions from seizures and other issues. Standard sleep questionnaires often miss epilepsy-specific concerns like co-sleeping and enuresis.
Area of Science:
- Pediatric Neurology
- Sleep Medicine
- Epilepsy Research
Background:
- Dravet syndrome (DS) is a severe form of epilepsy often associated with significant sleep disturbances.
- Existing sleep assessment tools may not adequately capture the unique challenges faced by children with DS.
Purpose of the Study:
- To characterize and quantify sleep disruptions in young individuals with Dravet syndrome.
- To identify factors contributing to sleep disturbances in this population based on parent reports.
Main Methods:
- A qualitative review of pediatric sleep instruments informed the development of a DS-specific questionnaire.
- The customized questionnaire was administered via an online survey to parents of children with severe epilepsy.
Main Results:
- 76 parents responded; 53% reported sleep disruptions due to seizures, with 48% experiencing nocturnal seizures multiple times weekly.
- 76% reported non-seizure-related nocturnal awakenings, affecting 30% multiple nights per week.
- Co-sleeping was common (59%), and 93% used sleep monitoring methods.
Conclusions:
- Sleep in young people with Dravet syndrome is frequently disrupted by seizures and other factors.
- Epilepsy-specific issues like co-sleeping and enuresis during seizures are critical but often overlooked.
- Development of tailored sleep measures is needed for this population.
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