Status epilepticus (SE) can occur in persons with or without epilepsy and is associated with high morbidity and mortality.This survey aimed to record self-reported frequency of SE in persons with epilepsy, its association with clinical characteristics and patient level of information on SE and rescue medication. 251 persons with epilepsy at a tertiary epilepsy center were included in the study.87 (35%) had a history of SE defined as seizure duration of more than 5 min. These patients were less likely to be seizure-free, and had a higher number of present and past anti-seizure medication. Female sex, cognitive disability, younger age at epilepsy onset, defined epilepsy etiology, and focal epilepsy were associated with a history of SE. On Cox regression analysis, female sex, defined etiology and focal classification remained significant. 67% stated that they had information about prolonged seizures, and 75% knew about rescue medication. 85% found it desirable to receive information about SE at the time of initial diagnosis of epilepsy, but only 16% had been offered such information at the time.SE is frequent among persons with epilepsy and there remain unmet needs regarding patient education.
Lisa Langenbruch, Christine Strippel, Dennis Görlich, Christian E Elger, Gabriel Möddel, Sven G Meuth, Christoph Kellinghaus, Heinz Wiendl, Stjepana Kovac