Study Reveals Inaccuracy of Patient Seizure Diaries

Neurologist Ithay Biton's research shows patients miss 60% of seizures and report 80% false-positives, raising concerns about reliance on self-reported data in epilepsy trials and treatment.

Published on Mar. 9, 2026

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In an interview with Dr. Andrew Wilner, neurologist Ithay Biton discusses his research revealing significant inaccuracies in patient seizure diaries. Biton's study, based on data from 2,000 patients monitored with ambulatory video EEG, found that patients miss 60% of their seizures on average and report 80% false-positives. The findings raise concerns about the reliability of patient-reported data in epilepsy clinical trials and day-to-day treatment management.

Why it matters

Patient seizure diaries are a crucial data source for developing new epilepsy drugs and managing individual patient care, but Biton's research suggests these self-reports may be highly inaccurate. This calls into question the validity of many past epilepsy studies and treatment decisions based on patient-reported seizure frequency. The findings highlight the need for more objective seizure monitoring, such as wearable devices, to supplement or replace patient diaries in future research and clinical practice.

The details

Biton's study used ambulatory video EEG monitoring of 2,000 patients over 3 days to establish a gold standard for actual seizure occurrence, which was then compared to patients' self-reported seizure diaries. The results showed patients missed 60% of their seizures on average and reported 80% false-positives. Biton noted that tonic-clonic (grand mal) seizures were the most accurately reported, with all 5 such seizures captured on video correctly identified by patients. However, focal seizures with impaired awareness and absence seizures had much higher rates of under-reporting and false-positives.

  • The study was based on 15-20 years of patient data from the Arkansas Epilepsy Program.

The players

Ithay Biton

A PhD researcher who collaborated with his father, Dr. Victor Biton, the director of the Arkansas Epilepsy Program, to conduct the study on the accuracy of patient seizure diaries.

Andrew N. Wilner

A professor of neurology at the University of Tennessee Health Science Center and an experienced neurologist and epilepsy expert who interviewed Ithay Biton about the study.

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What they’re saying

“We must not let individuals continue to damage private property in San Francisco.”

— Robert Jenkins, San Francisco resident (San Francisco Chronicle)

What’s next

Biton suggests that future epilepsy clinical trials should incorporate at least a few days of ambulatory or inpatient 24-hour EEG video monitoring to provide more objective seizure data to supplement patient diaries. He also notes that the timing of seizures throughout the day appears to be influenced by factors like seizure type, medication timing, and even body mass index, which could inform more personalized treatment approaches.

The takeaway

Biton's research highlights the significant limitations of relying on patient-reported seizure diaries, which appear to substantially underestimate actual seizure frequency. This calls into question the validity of many past epilepsy studies and treatment decisions, and underscores the need for more objective seizure monitoring technologies to improve the accuracy of data used in epilepsy research and clinical care.