Abstract, published in Epilepsy & Behavior
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.
Results: Survey responses were available for 91 patients (median age 7.6 years). Total seizure frequency varied from less than 1 to greater than 8 seizures per month, with tonic–clonic and myoclonic being the most frequent seizure types. DS adversely affected concentration, school learning, appetite, sleep, and overall behavior.
Compared with the general population, more parents were married and had higher educational achievement, while monthly net income was similar. Preparation of medication was generally done by the mother and father or the mother only. Most caregivers reported very low or no difficulty with treatment preparation and low or no risk of error. Parents typically spent < 30 min per day on treatment preparation and administration and around 4 hours per week for attending therapy appointments. Although most patients and parents were perceived to have good general health, mothers had a worse perception of their own general health than fathers. Compared with fathers, mothers reported a greater impact of caring for a child with DS on their social life, relationships with family and friends, time and energy, and professional life.
Conclusion: Families caring for a child with Dravet syndrome experience considerable social and economic impact, with an apparent greater burden of care on the mother than the father.