Status epilepticus (SE) is a common life-threatening neurological emergency in which prolonged or multiple closely spaced seizures can result in long-term impairments. SE remains associated with considerable mortality and morbidity, with little progress over the last three decades. The proportion of patients who die in the hospital is about 20% overall and 40% in patients with refractory SE. Morbidity is more difficult to evaluate, as adverse effects of SE are often difficult to differentiate from those attributed to the cause of SE. Our experience suggests that nearly 50% of patients may experience long-term functional impairments. The precise description of the consequences of these functional impairments and their impact on quality of life after SE requiring intensive care management has been little studied. Indeed, if cognitive, physical and mental impairments are now identified in the populations of patients who required intensive care under the term postresuscitation syndrome (PICS), neuronal lesions consecutive to the SE itselfor to its cause could be responsible for these different functional alterations.
Thus, the following have been described: (i) cognitive disorders in the areas of attention, executive functions and verbal fluency, visual and working memory disorders, but also spatio-temporal disorders; (ii) physical disorders such as the so-called post-resuscitation polyneuromyopathy; and (iii) mental disorders such as anxiety disorders, depressive states or those related to post-traumatic stress.
Assessment and characterization of patient-reported outcomes is essential to complement the holistic assessment of clinically relevant outcomes from the patient's perspective. The POSEIDON study was a cross-sectional collection of PROs and HR-QOL components, and associated with patient functional outcomes, in those who required ICU management for status epilepticus. We propose here to continue the description of potential alterations after a subsequent ME, namely a longitudinal study (POSEIDON 2) which will also include the evaluation of patient-reported experience (PREMS) and the measurement of family burden.
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
Legal guardianship
Opposition to participate
Unread and unwritten French language
Patient not affiliated to a Social Security system
All patients who meet the eligibility criteria will be offered participation in the study.
Cohort
Prospective
Not listed
percentage of global impairment of HRQoL
percentage of global impairment of HRQoL defined by one and/or other of the physical and mental impairments (after dichotomization of the SF 36 summary scores compared to the general population) in patients managed in the ICU for or with SE. 36-Item Short Form Survey (SF-36) (HRQoL)-Ranging score\[0-100\], a high score indicate better health status.
percentage of cognitive impairment in patients managed in the ICU for or with SE
i)The cognitive complaints questionnaire (Questionnaire de Plainte Cognitive (QPC)(Cognition)- a score=3 or more indicate cognitive complaints
percentage of disability in patients managed in the ICU for or with SE
The Glasgow Outcome Scale extended (Handicap)-Ranging score\[1-8\] a hight score indicate no handicap A score of 5 to 8 on the GOSE indicate a favorable outcome
percentage of physical dependency in patients managed in the ICU for or with SE
The Lawton IADL (scale contains eight items, with a summary score from 0 (low function) to 8 (high function).and Barthel index (Dependency)-Ranging score\[0-100\], a high score indicate no dependency.
percentage of anxiety and depression in patients managed in the ICU for or with SE
The Hospital anxiety and depression (Anxiety,Depression)-Ranging score\[0-21\] a score \> 8 indicate in each subscale a depresion or/and anxiety
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