Caregiver burden and care context in families with Dravet syndrome - a nationwide study in the Czech Republic

Dravet syndrome (DS) is a rare developmental and epileptic encephalopathy characterized by early-onset, drug-resistant seizures and significant long-term neurodevelopmental impairment. This cross-sectional observational study aimed to assess demographic characteristics and caregiving burden among individuals with DS and their informal caregivers in the Czech Republic, and to contribute to estimating disease prevalence and informing the need for national monitoring systems. Data were collected via a questionnaire distributed to informal caregivers (n = 44) between March and May 2025, incorporating the Caregiver Burden Scale and sociodemographic items. With a mean age of 41.5 years, mothers made up the majority of caregivers (93.2%), and they typically reported lower employment engagement. Approximately 34.9% of carers reported mental or psychiatric conditions. Patients (mean age 9.5 years) required extensive assistance across multiple domains of daily functioning. Caregiving burden was substantial, with stress reported in most domains, particularly medication management, supervision, transportation, and household-related activities. Limited access to respite care services was common, primarily due to insufficient availability and financial constraints. The findings highlight the high multidimensional burden associated with DS, affecting caregivers. The absence of systematic national data collection complicates epidemiological assessment and healthcare planning. Establishing a national registry and improving access to support services are essential for optimizing care and reducing caregiver burden. These results provide important baseline data for future research and policy development.