Unseen Yet Overcounted: The Paradox of Seizure Frequency Reporting

Abstract

Objective: Seizure control is often assessed using patient-reported seizure frequencies. Despite its subjectivity, self-reporting remains essential for guiding anti-seizure medication (ASM) decisions and ongoing patient investigations. Additionally, clinical trials frequently rely on self-reported seizure rates for participant selection and outcome measures. This study aims to compare patient-reported seizure frequencies with electrographic frequencies captured via ambulatory video EEG (avEEG). Methods: Data from intake forms and seizure diaries were collected from patients undergoing home-based avEEG in Australia (April 2020 to April 2022). Intake forms included monthly seizure frequency estimates. Only avEEG-confirmed epilepsy cases were analyzed. Univariate and multivariate analyses compared seizure frequencies reported via EEG, diaries, and surveys. Results: Of 3,407 reports, 853 identified epilepsy cases, with 234 studies analyzed after excluding outliers. Diary-reported frequencies correlated with EEG frequency (p<0.00001), but survey-reported frequencies did not (p>0.05). Surveys significantly overestimated seizure frequency (median = 3.98 seizures/month, p<0.0001), while diaries showed substantially smaller differences (median = 0.01 seizures/month, p<0.0001). Carer presence was associated with higher diary-reported frequencies (p=0.047). Age negatively correlated with survey frequency estimation error (p=0.016). Multivariate analysis identified age and carer status as significant predictors of residuals. Conclusions: Most patients overestimate their seizure frequency, influencing therapeutic decisions and raising concerns about the reliability of self-reported data in clinical trials. Significance: An over-reporting, over-prescribing cascade may affect epilepsy treatment and highlights the issue of clinical drug trials relying on self-reported seizure rates.

Competing Interest Statement

MC and EN have a financial interest in Seer Medical Holdings Ltd. MC has a financial interest in Epiminder Pty Ltd. The other authors have no conflicts to declare.

Funding Statement

No specific funding was received for this study.

Author Declarations

I confirm all relevant ethical guidelines have been followed, and any necessary IRB and/or ethics committee approvals have been obtained.

Yes

The details of the IRB/oversight body that provided approval or exemption for the research described are given below:

Ethics approval for this study was obtained from the St. Vincent's Hospital Melbourne Human Research Ethics Committee

I confirm that all necessary patient/participant consent has been obtained and the appropriate institutional forms have been archived, and that any patient/participant/sample identifiers included were not known to anyone (e.g., hospital staff, patients or participants themselves) outside the research group so cannot be used to identify individuals.

Yes

I understand that all clinical trials and any other prospective interventional studies must be registered with an ICMJE-approved registry, such as ClinicalTrials.gov. I confirm that any such study reported in the manuscript has been registered and the trial registration ID is provided (note: if posting a prospective study registered retrospectively, please provide a statement in the trial ID field explaining why the study was not registered in advance).

Yes

I have followed all appropriate research reporting guidelines, such as any relevant EQUATOR Network research reporting checklist(s) and other pertinent material, if applicable.

Yes

Data Availability

Data used in this study are available upon reasonable request to the corresponding author.

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