Understanding patient experiences after severe seizures
Patient-reported Outcomes in Status Epilepticus Requiring Intensive Care Unit Management. A Multicenter Longitudinal Cohort Study
This study looks at the long-term experiences and challenges faced by people who have survived severe seizures to see how it affects their daily lives and well-being.
Quick facts
| Study type | Observational |
|---|---|
| Enrollment | 145 (estimated) |
| Ages | 18 Years and up |
| Sex | All |
| Sponsor | Versailles Hospital Academic / other |
| Locations | 13 sites (Angoulême and 12 other locations) |
| Trial ID | NCT06100978 on ClinicalTrials.gov |
What this trial studies
This observational study aims to evaluate the long-term outcomes and patient-reported experiences of individuals who have survived status epilepticus, a life-threatening neurological emergency. It focuses on assessing the functional impairments and quality of life in patients who required intensive care management. By analyzing data from patients who were previously part of the ICTAL registry, the study seeks to provide insights into the cognitive, physical, and mental challenges faced by these individuals post-ICU discharge. The findings could help improve care strategies for future patients.
Who should consider this trial
Good fit: Ideal candidates include adults aged 18 and older who have survived status epilepticus and were discharged from the ICU between 3 months and 5 years prior.
Not a fit: Patients who are legal guardians, oppose participation, cannot communicate in French, or are not affiliated with a Social Security system may not benefit from this study.
Why it matters
Potential benefit: If successful, this study could enhance understanding of the long-term impacts of status epilepticus, leading to better patient care and support.
How similar studies have performed: While there has been limited research on the long-term outcomes of status epilepticus, this study addresses a relatively novel area of patient experience that has not been extensively explored.
Eligibility criteria
Show full inclusion / exclusion criteria
Inclusion Criteria: * 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 Exclusion Criteria: * Legal guardianship * Opposition to participate * Unread and unwritten French language * Patient not affiliated to a Social Security system
Where this trial is running
Angoulême and 12 other locations
- CH d'Angoulême — Angoulême, France (Recruiting)
- CH de Béthune — Béthune, France (Recruiting)
- Hôpital Beaujon — Clichy, France (Recruiting)
- Hôpital Henri Mondor — Créteil, France (Recruiting)
- CHU de Dijon — Dijon, France (Recruiting)
- CHU de Grenoble — Grenoble, France (Recruiting)
- CH de La Rochelle — La Rochelle, France (Recruiting)
- CH Versailles — Le Chesnay, France (Recruiting)
- CHU de Nantes — Nantes, France (Recruiting)
- Hôpital Paris Saint Joseph — Paris, France (Not_yet_recruiting)
- CH de Roanne — Roanne, France (Recruiting)
- Hôpital Foch — Suresnes, France (Not_yet_recruiting)
- CHU Tours — Tours, France (Not_yet_recruiting)
Study contacts
- Study coordinator: Gwenaelle Jacq, RN,MSc,PhDc
- Email: gjacq@ght78sud.fr
- Phone: 33139638356
How to participate
- Review the eligibility criteria above with your treating physician.
- Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
- Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.