Over‐ and underreporting of seizures: How big is the problem?

Abstract Objective Clinical decisions on managing epilepsy patients rely on patient accuracy regarding seizure reporting. Studies have noted disparities between patient‐reported seizures and electroencephalographic (EEG) findings during video‐EEG monitoring periods, chiefly highlighting underreporting of seizures, a well‐recognized phenomenon. However, seizure overreporting is a significant problem discussed within the literature, although not in such a large cohort. Our aim is to quantify the over‐ and underreporting of seizures in a large cohort of ambulatory EEG patients. Methods We performed a retrospective data analysis on 3407 patients referred to a diagnostic service for ambulatory video‐EEG between 2020 and 2022. Both patient‐reported events and events discovered on review of the video‐EEG were analyzed and classified as epileptic, psychogenic (typically clinical motor events, without accompanying EEG change), or noncorrelated events (NCEs; without perceivable clinical or EEG change). Events were analyzed by state of arousal and indication for referral. Subgroup analysis was performed in patients with focal and generalized epilepsies. Results A total of 21 024 events were recorded by 3407 patients. Fifty‐eight percent of reported events were NCEs, whereas 27% of all events were epileptic. Sixty‐four percent of epileptic seizures were not reported by the patient but discovered by the clinical service on review of the recording. NCEs were in the highest proportion in the awake and drowsy arousal states and were the most common event type for the majority of referral indications. Subgroup analysis found a significantly higher proportion of NCEs in the patients with focal epilepsy (23%) compared to generalized epilepsy (10%; p < .001, chi‐squared proportion test). Significance Our results reaffirm the phenomenon of underreporting and highlight the prevalence of overreporting. Overreporting likely represents irrelevant symptoms or electrographic discharges not represented on scalp electrodes, identification of which has important clinical relevance. Future studies should analyze events by risk factors to elucidate relationships clinicians can use and investigate the etiology of NCEs.