Study on Patient Experiences and Long-Term Outcomes After Intensive Care for Status Epilepticus

What this Trial Is About

Status epilepticus SE is a serious neurological emergency marked by prolonged or multiple seizures that can cause lasting impairments and has a high risk of death and complications. Despite advances, mortality remains about 20% overall and up to 40% in refractory cases. Many survivors experience cognitive, physical, and mental difficulties, but the long-term impact on quality of life after intensive care treatment is not well understood. This study aims to continue observing these effects over time, focusing on patient-reported outcomes and experiences following SE requiring ICU care. This observational study follows adults who survived ICU management for SE, assessing their health and well-being more than 3 months but less than 5 years after ICU discharge. It builds on previous registry data and collects detailed information on cognitive function, physical disability, mental health, social support, and family burden. The study includes repeated assessments at 3 and 12 months to track changes and experiences over time. Participants will be evaluated through questionnaires and patient-reported measures to capture their quality of life, cognitive and physical impairments, anxiety, depression, and post-traumatic stress disorder. The study also assesses social support and experiences of both patients and their relatives with the healthcare system. Researchers aim to better understand the long-term effects of SE and ICU care, with the study lasting until March 2027.

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