Burden of disease in patients with a history of status epilepticus and their caregivers

•Data on burden of disease on caregivers of patients with a history of SE are scarce.•This study assessed the burden of disease on caregivers and patients in the USA.•Critical components of the burden of disease are described.•Data presented indicate that SE places a high burden across a variety of domains.•The study highlighted that the burden goes past the immediate impact of an SE event.