Patient-reported Outcomes in Status Epilepticus Requiring Intensive Care Unit Management. A Multicenter Longitudinal Cohort Study

What this Trial Is About

Status epilepticus (SE) is a serious neurological emergency involving prolonged or repeated seizures that can cause lasting impairments and high rates of death and disability. This research follows patients who survived SE requiring intensive care to better understand their long-term cognitive, physical, and mental health challenges, including anxiety, depression, and post-traumatic stress. The study aims to provide a deeper look at patient-reported outcomes and experiences, along with the burden on their families after SE. This observational study continues from a previous cross-sectional investigation by collecting detailed data over time to track changes in health-related quality of life and functional abilities up to one year after intensive care. It includes assessments of cognitive function, physical dependency, emotional health, social support, and the ability to return to work. The study also evaluates patients' and their relatives' experiences with the healthcare system at 3 and 12 months post-discharge. Participants will be followed through questionnaires and assessments at 3 and 12 months after ICU discharge. Researchers will measure overall quality of life impairments, cognitive and physical disabilities, mental health symptoms, social support satisfaction, and family burden. This longitudinal approach aims to improve understanding of post-ICU outcomes and guide future care. The study is led by Versailles Hospital and involves adults who survived ICU treatment for SE at least three months ago.

Patient-reported Outcome and Patient-reported Experience After Status Epilepticus