The burden of the postictal state in epilepsy: A prospective, single-center observational cohort study.
OBJECTIVE The postictal state is a major yet underrecognized component of the epilepsy burden. We aimed to develop a structured patient-reported instrument to quantify postictal recovery, characterize its multidimensional burden, and identify demographic, clinical, psychiatric, and treatment-related factors associated with postictal severity and duration. METHODS We conducted a prospective, single-center observational cohort study (Timone Hospital, Marseille, February 2025-March 2026). Consecutive patients aged ≥15 years admitted for scalp or stereo-EEG video-monitoring were included. Patients completed the Postictal Recovery Scale (PRS), an 11-domain questionnaire assessing fatigue, mood, sensory, motor, language, orientation, time perception, and postictal amnesia. Items were rated from 0 (severe impairment) to 3 (no symptoms), yielding a total score of 0-33. Internal consistency was assessed using Cronbach's alpha. Associations between PRS scores, subjective postictal duration and covariates were analyzed using group comparisons, correlations, and regression models. RESULTS Of 107 enrolled patients, 96 were included. PRS showed good internal consistency (Cronbach's α = 0.79). 96% of patients reported experiencing postictal symptoms, with fatigue (80%) and postictal amnesia (79%) being the most frequent and severe manifestations. Recovery exceeded 1 h in 21% of patients. Greater postictal impairment was associated with higher interictal anxiety (Spearman ρ = -0.32, p = 0.0018) and depressive symptoms (Spearman ρ = -0.40, p = 0.0001), whereas demographic, epilepsy-related, and treatment variables showed no significant associations. Altered postictal time perception was reported by 40% of patients and was associated with disorientation, but not postictal psychiatric symptoms. Subjective postictal duration was longer than subjective ictal duration (Wilcoxon test, p < 0.0001). SIGNIFICANCE The postictal state is a frequent and multidimensional patient-reported experience. Greater postictal severity, particularly concerning anxiety and depression, is associated with interictal psychiatric comorbidity, while altered temporal experience emerges as a distinct dimension of postictal dysfunction. These findings support integrating postictal measures into clinical practice and trials.