Perceived seizure risk in epilepsy - Chronic electronic surveys with and without concurrent EEG

Abstract

Objective: Previous studies suggested that patients with epilepsy might be able to forecast their own seizures. We sought to assess the relationships of premonitory symptoms and perceived seizure risk with future and recent self-reported and EEG-confirmed seizures in the subjects living with epilepsy in their natural home environments. Methods: We collected long-term e-surveys from ambulatory patients with and without concurrent EEG recordings. Information obtained from the e-surveys included medication compliance, sleep quality, mood, stress, perceived seizure risk and seizure occurrences preceding the survey. EEG seizures were identified. Univariate and multivariate generalized linear mixed-effect regression models were used to estimate odds ratios (ORs) for the assessment of the relationships. Results were compared with device seizure forecasting literature using a mathematical formula converting OR to equivalent area under the curve (AUC). Results: Sixty-nine subjects returned 12,590 e-survey entries, with four subjects acquiring concurrent EEG recordings. Univariate analysis revealed increased stress (OR = 2.52, 95% CI = [1.52, 4.14], p < 0.001) and decreased mood (0.32, [0.13, 0.82], 0.02) were associated with increased relative odds of future self-reported seizures. On multivariate analysis, previous self-reported seizures (4.24, [2.69, 6.68], < 0.001) were most strongly associated with future self-reported seizures, and high perceived seizure risk (3.30, [1.97, 5.52], < 0.001) remained significant when prior self-reported seizures were added to the model. No significant association was found between e-survey responses and subsequent EEG seizures. Significance: It appears that patients may tend to self-forecast seizures that occur in sequential groupings. Our results suggest that low mood and increased stress may be the result of previous seizures rather than independent premonitory symptoms. Patients in the small cohort with concurrent EEG showed no ability to self-predict EEG seizures. The conversion from OR to AUC values facilitates direct comparison of performance between survey and device studies involving survey premonition and forecasting.

Competing Interest Statement

P.F.V. has received travel fees and payment for an unrelated research task from UNEEG Medical. E.S.N., P.J.K., and D.R.F. have a financial interest in Seer Medical. B.H.B. has licensed IP to Cadence Neuroscience Inc., and has research support from UNEEG Medical and the Epilepsy Foundation of America. The other authors disclosed no conflict of interests.

Funding Statement

This study was supported by the Epilepsy Foundation of America's My Seizure Gauge grant, and the National Institutes of Health (UG3 NS123066 to B.H.B.). J.C. was also partially supported by DARPA HR0011-20-2-0028 (to G.W.).

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:

All activities were approved by St. Vincent's Hospital Melbourne Human Research Ethics Committee at Seer Medical, Mayo Clinic IRB: 18-005483 "Human Safety and Feasibility Study of Neurophysiologically Based Brain State Tracking and Modulation in Focal Epilepsy", and Institutional Review Boards of Ethics Committees at King's College London, and all subjects provided informed consent.

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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).

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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

Limited data are available upon reasonable request to the authors.

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