Caregiver impact and health service use in high and low severity Dravet syndrome: A multinational cohort study

Abstract

PurposeTo estimate costs associated with the current management of Dravet syndrome (DS), explore psychosocial aspects of the disease in caregivers and siblings, and identify patient characteristics associated with higher costs in a large, predominantly European survey cohort of patients and their caregivers conducted in 2016. MethodsHealth and social care resource use, productivity and quality of life (QoL) data were summarised. Costs for European five (EU5) countries (France, Germany, Italy, Spain and UK) were calculated and patients with high and low current seizure burden compared. Direct healthcare costs and out-of-pocket costs were calculated using literature reported health service costs and participant reported costs, respectively. ResultsDirect annual costs of management of non-seizure-related symptoms ($7929) contributed to approximately 50% of all costs (including medication). Excluding medication, non-seizure-related costs dominated costs of care. Cost for patients with high seizure burden were higher for seizure-related healthcare use and physiotherapy, but lower for other therapies. Most (80%) caregivers reported an influence on their career choices and 28% of those in work had missed over three working days in the past four weeks for emergency or routine needs of their child. Caregivers had little free time, relied on family members for support and respite, and experienced emotional stress and uncertainty about their child’s future healthcare needs. ConclusionFamilies caring for a DS patient manage considerable social and financial impacts. Total direct costs of DS patients (excluding drugs) are driven by non-seizure-related healthcare use and high seizure burden is associated with higher healthcare costs.