Nicole Villas|Mary Anne Meskis|Sue Goodliffe
Dravet syndrome: Characteristics, comorbidities, and caregiver concerns
Dravet Syndrome Foundation|Dravet Syndrome Foundation|Dravet Syndrome Foundation
dravet syndrome foundation dsf conducted largest indepth survey parents caregivers patients dravet syndrome ds date order 1 identify top concerns among caregivers 2 establish approximate frequency characteristics comorbidities ds beyond seizures 3 provide direction clinicians researchers looking study effects ds patient family unit two hundred fiftysix responses received representing patient age range 9 months 32 years median age group 710 years iqr 8 open response caregivers ranked speechcommunication impacts siblings cognitive impairment top concerns seizure control nearly twothirds caregivers reported suffered depression characteristics ds gait issues increased patient age others including photosensitivity hypotonia ataxia present young age comorbidities sleep disturbances cardiac abnormalities frequently reported previous studies including bradycardia correlated scn1a mutation status survey supports concept dravet syndrome disease central nervous system farreaching effects highlights importance patient voice determining appropriate research objectives seizure frequency relatively wellunderstood objective seizures represent portion parent caregiver concerns studying characteristics ds described herein may identify additional outcomes significant research