The Life With Dravet Syndrome: Socioeconomic Impact of the Disease on Patients and Their Caregivers in the Czech Republic

OBJECTIVES: Dravet syndrome (DS) is a rare, treatment-resistant, lifelong, developmental and epileptic encephalopathy characterized by multiple seizure types and high seizure burden. Our study explored its socioeconomic burden.

METHODS: A cross-sectional questionnaire survey was conducted to observe local Czech data on the socioeconomic impact on DS patients and their caregivers. Data were collected between 03-Oct-2022 and 09-Oct-2022 in cooperation with the patient association Epicana. We collected demographic and clinical data for both patients and caregivers, healthcare resource use data, out-of-pocket and social transfer costs, WPAI, EQ-5D-5L, Zarit Scale of Caregiver Burden. Work productivity costs were assessed using a human capital approach and discounted by 3%.

RESULTS: Twenty-one main caregivers (100% women) of patients with DS completed the questionnaires (mean age 41 years). The mean EQ-5D-5L score for caregivers was 0.733. In 20 completed patient questionnaires, 70% were female, with a mean age of 7 years.

Total out-of-pocket costs per caregiver (n=21) related to their DS patient were including transport costs, medical equipment, additional payments for medicines/co-payments, over-the-counter medicines, vitamins and other costs (e.g. rehabilitation, personal assistant). A significant proportion of caregivers received a care allowance (86%), mobility allowance (62%), child allowance (19%), with total social transfer costs per caregiver amounting to €715.39/month.

The work impairment of employed caregivers (n=8) was 41% (16.4 hours/week), with the majority being presenteeism 36.25% (14.5 hours/week). Total lifetime discounted productivity loss costs of the entire Czech caregiver cohort (n=100) were €25,113,821 (€251,138/caregiver) with undiscounted costs for the entire cohort at €34,480,061.

CONCLUSIONS: This cross-sectional survey showed that DS imposes a significant societal burden. Caregivers' quality of life, work ability, and daily activities are severely impaired due to their caregiving responsibilities. The overall burden on health and social systems is also considerable.