Impact of childhood Dravet syndrome on care givers of patients with DS, a major impact on mothers.

Abstract Background The aim of this study was to understand the impact of Dravet syndrome (DS) on patients with Dravet syndrome and their families, with a focus on the social and economic impact on both mothers and fathers. Methods A French language on-line survey was distributed (October 2014–January 2015) for completion by caregivers of patients aged Results Survey responses were available for 91 patients (median age 7.6 years; 81.6% SCN1A mutation positive). Total seizure frequency was > 2 per week for 16.1% of patients, 1–8 per month for 55.2% and  Most parents were married (80.5%) with higher rates than the French general population (53.5%). Educational achievement and socio-professional categories for the parents were higher than observed in the French general population, while monthly net income was similar. Preparation of medication was generally done by the mother and father (46.0% of patients) or the mother only (37.9%). Most caregivers reported very low or no difficulty with treatment preparation and low or no risk of error. Parents typically spent Conclusion Families caring for a child with DS experience considerable social and economic impact, with an apparent greater burden of care on the mother than the father.