Source:Pediatric Neurology
Author(s): Kelly G Knupp, Sharon Scarbro, Greta Wilkening, Elizabeth Juarez-Colunga, Allison Kempe, Amanda Dempsey
ObjectiveWe hypothesized that children with Dravet syndrome may have additional common features beyond seizures and cognitive impairment. To address this gap in knowledge, we conducted a survey of caregivers of children with Dravet syndrome to identify and quantify their perception of associated symptoms in this population.MethodsAn electronic survey was developed in REDcap and sent vial email to the participants on the Dravet syndrome Foundation email list. Questions focused on eating, sleep, behavior and other symptoms that might be related to Dravet syndrome. The questions were assessed using a 4 point Likert scale (ex: Strongly Agree to Strongly Disagree). Results were later dichotomized for analysis. Logistic regression was used to calculate odds ratios of various demographic factors potentially associated with symptoms. Multivariable models were constructed using backwards elimination to assess the relationship between a variety of symptoms.ResultsThere were 202 respondents, 96% were parents of a child with Dravet syndrome (the remainder were grandparents or guardians); 90.5% were female. The median age of the affected child was 8 years (IQR 5 -14), 50% were male and 90.5% were reported to have a known SCN1A mutation. At least one symptom associated with appetite was reported in 99% of respondants, 82% reported a disturbance of sleep, 1/3 reported autonomic symptoms and 75% reported problems with gait. Inattention and perseveration were reported more commonly than other behavioral disturbances.SignificanceCaregivers have the perception of many symptoms in children with Dravet syndrome in addition to those that have been previously reported, including appetite, sleep, gait and behavior. Many of these can significantly affect quality of life for both the child and caregiver.
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