Living with Dravet syndrome: quality of life and caregiver burden among family caregivers in Europe. Results from the QoL4DRAVET study

Background Dravet syndrome (DS) is a rare, severe developmental epileptic encephalopathy associated with lifelong clinical complexity and substantial caregiving demands. This study describes the quality of life and caregiver burden among family caregivers of individuals with DS across Europe. Methods This cross-sectional, multinational study was conducted as part of the QoL4Dravet – Measuring Quality of Life in Dravet Syndrome project coordinated by the Dravet Syndrome European Federation. 379 family caregivers (322 females and 57 males) completed an anonymous, self-administered online questionnaire from 14 European countries. Results Caregiving for individuals with DS was associated with a high and sustained burden extending beyond the diagnostic period. Although diagnosis typically occurred early in life, most individuals with DS in this cohort were already adolescents or adults, underscoring the long-term and persistent nature of the disease. This prolonged trajectory was characterised not only by ongoing seizure activity, complex treatment regimens, and frequent need for rescue medication, but also by the continuous management and rehabilitation of associated neurodevelopmental comorbidities, including behavioural and motor difficulties, cognitive and communication impairments. Caregivers reported pronounced impairments in emotional well-being, sleep, fatigue, and stress, while physical functioning was relatively preserved. Only 26.4% of caregivers were employed full-time, whereas 25.6% identified as full-time caregivers, with marked cross-country variation. Women reported poorer emotional well-being, lower autonomy, and poorer social well-being than men, while no sex differences were observed in physical well-being. Significant cross-country differences were found in emotional well-being and autonomy, with poorer outcomes reported in Poland and more favourable profiles in the Netherlands and Germany. Conclusions Caregiving burden in DS is long-term, multidimensional, and shaped by both gendered caregiving roles and national contexts. These findings underscore the necessity for integrated, gender-sensitive, and policy-informed support strategies that cater to caregivers' psychological, social, and occupational needs throughout their life course.