What is this study trying to find out about status epilepticus?

This study aims to understand the long-term effects of status epilepticus (SE) on patients who required intensive care, focusing on their quality of life, cognitive function, physical health, and mental well-being. Researchers are also assessing patient and family experiences after SE. The study is led by Versailles Hospital to improve knowledge about recovery after this serious condition.

Who may be eligible for this status epilepticus clinical trial?

Adults aged 18 years or older who survived intensive care treatment for status epilepticus and were previously included in the ICTAL registry may be eligible. Participants must be at least three months but less than five years past ICU discharge and able to read and write in French. Please review eligibility criteria for more details.

Is there any cost to participate in this status epilepticus clinical trial?

Study-related care, including all assessments and follow-up visits, is provided at no cost. However, personal travel expenses to attend study visits may vary and are not guaranteed to be covered.

Actively Recruiting

Age: 18Years +

All Genders

ID06100978

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

Led by Versailles Hospital · Updated on 2024-11-05

145

Participants Needed

Research Sites

57 weeks

Total Duration

AI-Summary

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.

CONDITIONS

Brief Title

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

Who Can Participate

Age: 18Years +

All Genders

Eligibility Criteria

You may qualify if you...

Adults 18 years old or older
Patients previously included in the ICTAL registry (Status Epilepticus cohort NCT03457831)
Survivors after ICU management for Status Epilepticus more than 3 months and less than 5 years after ICU discharge

You will not qualify if you...

Legal guardianship
Opposition to participate
Inability to read and write French
Patient not affiliated to a Social Security system

Research Team

Gwenaelle Jacq, RN,MSc,PhDc

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