Health-Related quality of life after status epilepticus: A cross-sectional study from the ICTAL registry

Abstract

Background and objectives: Clinical outcome assessment (COA), particularly health-related quality of life (HRQoL) is an important component of patient-centered outcome assessment. Few studies have evaluated this in the context of the status epilepticus (SE). The objective of the current study was to describe COAs in patients who had been critically ill with SE.

Methods: We conducted a cross-sectional study in patients previously included in the ICTAL Status Epilepticus Registry between February 2018 and February 2022 in 15 French intensive care units. Eligible patients were invited to complete COA questionnaires covering the following domains: HRQoL, dependency, mental health, cognitive status, and social support. These were performed up to 5 years after the SE episode.

Results: The median [IQR] age of the 66 responders was 58 [47, 68] years and 43 patients (65.2 %) were male. A total of 15 patients (22.7 %) had a previous history of epilepsy. Overall, 48 patients (70.7 %) in our cohort presented with worse HRQoL than the general population. Physical and mental composite scores showed similar alterations, with mean (SD) values of 42.1 (11.1) and 42.3 (12.5), respectively. A strong and significant correlation was identified between the 36-item Short-Form (SF-36) total score and domains of dependency and mental health. The search for an association between predictors of poor outcome after SE and HRQoL findings at the time of the cross-sectional assessment in patients with a worse SF-36 score than the reference population was negative for all variables tested.

Discussion: We report poorer HRQoL among patients treated for SE. Longitudinal studies are needed to corroborate these findings.

Keywords: Clinical Outcome Assessments; Health-Related Quality of Life; Patient-Reported Outcomes; Status Epilepticus.