Perceived seizure risk in epilepsy â€" Chronic electronic surveys with and without concurrent EEG.

Objective: Previous studies suggested that patients with epilepsy might be able to fore-cast 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. Key points: Long-term e-surveys data and concurrent EEG signals were collected across three study sites to assess the ability of the patients to self-forecast their seizures.Patients may tend to self-forecast self-reported seizures that occur in sequential groupings.Factors, such as mood and stress, may not be independent premonitory symptoms but may be the consequence of recent seizures.No ability to self-forecast EEG confirmed seizures was observed in a small cohort with concurrent EEG validation.A mathematic relation between OR and AUC provides a means to compare forecasting performance between survey and device studies.