Sleep in Dravet syndrome: A parent-driven survey

ObjectivesTo describe and quantify the nature severity of sleep disruptions in young people with Dravet syndrome (DS) based upon parent report.MethodsQualitative review available pediatric instruments members Foundation led to design a series questions customized DS other severe epilepsies. The questionnaire was administered as part an on-line survey that reflected specific sleep-related concerns parents children epilepsy.Results76 parent-respondents completed for their children-participants. Children’s median age 7.5 years (IQR 4.7–15.3); 41 (54 %) were female. majority (70/76, 93 used some method monitor while sleeping; co-sleeping most common (45/76, 59 %). Seizures disrupted 40/76 (53 %); 19(48 reported nocturnal seizures 3 or more nights per week. In addition, 58/76 (76 also non-seizure-related awakenings 30 reporting affected week.SignificanceYoung have frequently secondary factors. Co-sleeping practices, medication effects, enuresis during factors are not considered on standard questionnaires. Current findings highlight frequency epilepsy-specific lay groundwork measures appropriate this population.