Sleep in Dravet syndrome: A parent-driven survey

Abigail Van Nuland, Anna Ivanenko, Mary Anne Meskis, Nicole Villas, Kelly G. Knupp, Anne T. Berg*

*Corresponding author for this work

Research output: Contribution to journalArticlepeer-review

Abstract

Objectives: To describe and quantify the nature and severity of sleep disruptions in young people with Dravet syndrome (DS) based upon parent report. Methods: Qualitative review of available pediatric sleep instruments with parent members of the Dravet syndrome Foundation led to the design of a series of questions customized to DS and other severe epilepsies. The questionnaire was administered as part of an on-line survey that reflected specific sleep-related concerns of parents of children with severe epilepsy. Results: 76 parent-respondents completed the survey for their children-participants. Children's median age was 7.5 years (IQR 4.7–15.3); 41 (54 %) were female. The majority of parents (70/76, 93 %) used some method to monitor children while sleeping; co-sleeping was the most common method (45/76, 59 %). Seizures disrupted sleep in 40/76 (53 %); 19(48 %) reported nocturnal seizures 3 or more nights per week. In addition, 58/76 (76 %) also reported non-seizure-related nocturnal awakenings with 30 reporting awakenings 3 or more nights affected per week. Significance: Young people with Dravet syndrome have frequently disrupted sleep secondary to seizures and other factors. Co-sleeping practices, medication effects, enuresis during seizures and other factors are not considered on standard sleep questionnaires. Current findings highlight the frequency of epilepsy-specific concerns and lay groundwork for sleep measures more appropriate for this population.

Original languageEnglish (US)
Pages (from-to)102-110
Number of pages9
JournalSeizure
Volume85
DOIs
StatePublished - Feb 2021

Keywords

  • Dravet syndrome
  • Epilepsy
  • Nocturnal awakenings
  • Nocturnal seizures
  • Sleep

ASJC Scopus subject areas

  • Neurology
  • Clinical Neurology

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