Abstracts

Rationale: Dravet Syndrome (DS) is a rare, devastating epileptic encephalopathy marked by frequent, multiple seizure types, including status epilepticus, neurodevelopmental problems, and increased rates of sudden unexpected death in epilepsy. Caring for these children would therefore be expected to have significant impact on the lives of caregivers. Methods: We conducted a survey to assess the impact of caring for a child with DS on caregivers’ health and productivity. Respondents were identified from a single institution with a large Dravet population. Survey domains included caregiver health-related quality of life, time spent and difficulty performing caregiving tasks, and work-related productivity. These were assessed using the EuroQoL 5D 5L (EQ 5D-5L) health-related quality of life survey, and modified versions of the Oberst Caregiving Burden Scale and the Work Productivity and Activity Impairment questionnaire. Select questions from the National Health Interview Survey (NHIS) were also included. Results: Thirty-four of 60 primary caregivers (57%) responded to the survey; 30 of the 34 responders (88%) fully completed the survey. The mean general health EQ 5D-5L VAS score was 67 (range 11-94, 0=death; 100=perfect health); 40% of responders scored 67 or less. Caregivers were nearly twice as likely to score 1 day of work in the past week, with 43% reporting a high degree of impact on work productivity. Sixty-five percent reported either switching jobs, quitting jobs, or losing a job due to caregiving responsibilities. NHIS responses showed that caregivers also deal with significant logistical burdens beyond their daily home routine; 67% of caregivers had to coordinate one or more hospital/ER visits, while 50% coordinated 10 or more outpatient visits per year for their child with DS. Conclusions: In this single-center cohort, caring for patients with DS exerts substantial physical, emotional, and time burdens on caregivers. These findings highlight an unmet need for better treatments and potential areas for which supportive services would be helpful in reducing the overall impact on caregivers. Funding: This study was funded by Zogenix, Inc.