DAY 3 | Patient Reports of Seizure Frequency and Severity Are Unreliable

Ambulatory electroencephalogram (EEG) monitoring remains the most reliable source of information regarding seizure activity, according to data presented at the 2025 American Epilepsy Society Annual Meeting, in Atlanta, Georgia, which showed that patient reporting of seizure frequency and severity often lacks accuracy. 

A retrospective review of more than 2,000 records of patients who underwent ambulatory EEG video monitoring at home for 1 to 3 days showed that patient reports missed more than half of the confirmed seizures. The study included data collected over 18 years from 407 patients with 1,605 confirmed seizures and 1726 patient-reported events. Patients and caregivers were instructed to “push the button” on the monitoring device when they perceived a seizure and to describe the event, which was considered a patient report. Seizures recorded by EEG and all “push button events” were reviewed by a board-certified epileptologist at the Arkansas Epilepsy Program in Little Rock, Arkansas. A large proportion of the patients had simple focal seizures or myoclonic seizures. 

On average, patients failed to report 60% of their seizures, and reported 80% false positives, suggesting that patient diaries and perceptions of seizure activity are unreliable. Convulsive seizures and those involving jerking are rarely missed by patients. However, the study confirmed that seizures involving impairment of awareness or memory are more likely to be missed. Patients with focal epilepsy had the highest rate of false positives (83%) in the study. 

“The seizures that affect patient awareness were missed most often, as you might expect, and the convulsive seizures were missed the least,” lead author Ithay Biton, MS, said during a scientific poster presentation. “The main takeaway from this study is that patient diaries and patient or caregiver push buttons are not very reliable. We think that ambulatory EEG is still the best, despite being inconvenient, and we hope that better, upgraded technologies will be developed to provide reliable EEG [monitoring] over long periods of time. We base everything, including treatment and clinical trials, on patient reporting, but these results show that it is insufficient.” Multi-faceted approaches to monitoring, which can detect motion, autonomic function, and other body characteristics, used in combination with EEG data, may provide the most accurate picture of a patient’s seizure activity, the author concluded.