| Title: |
Unseen yet overcounted: The paradox of seizure frequency reporting |
| Authors: |
Wong, V; Hannon, T; Fernandes, KM; Cook, MJ; Nurse, ES |
| Publisher Information: |
Elsevier |
| Publication Year: |
2025 |
| Collection: |
The University of Melbourne: Digital Repository |
| Description: |
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. 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–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 true 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 true seizure frequency, potentially influencing therapeutic decisions and raising concerns about the reliability of some participants and carers to self-report seizures in clinical trials. Significance: An “over-reporting, over-prescribing” cascade may affect epilepsy treatment and highlights the potential issue of clinical drug trials relying on self-reported seizure rates for primary endpoints. |
| Document Type: |
article in journal/newspaper |
| Language: |
English |
| ISSN: |
1525-5050 |
| Relation: |
Wong, V., Hannon, T., Fernandes, K. M., Cook, M. J. & Nurse, E. S. (2025). Unseen yet overcounted: The paradox of seizure frequency reporting. Epilepsy and Behavior, 165, https://doi.org/10.1016/j.yebeh.2025.110335.; https://hdl.handle.net/11343/364936 |
| Availability: |
https://hdl.handle.net/11343/364936 |
| Rights: |
https://creativecommons.org/licenses/by/4.0/ ; CC-BY |
| Accession Number: |
edsbas.68817B62 |
| Database: |
BASE |