Characteristics of large patient‐reported outcomes: Where can one million seizures get us?

OBJECTIVE: To analyze data from Seizure Tracker, a large electronic seizure diary, including comparison of seizure characteristics among different etiologies, temporal patterns in seizure fluctuations, and specific triggers. METHODS: Zero‐inflated negative binomial mixed‐effects models were used to evaluate temporal patterns of seizure events (during the day or week), as well as group differences in monthly seizure frequency between children and adults and between etiologies. The association of long seizures with seizure triggers was evaluated using a mixed‐effects logistic model with subject as the random effect. Incidence rate ratios (IRRs) and odds ratios were reported for analyses involving zero‐inflated negative binomial and logistic mixed‐effects models, respectively. RESULTS: A total of 1,037,909 seizures were logged by 10,186 subjects (56.7% children) from December 2007 to January 2016. Children had more frequent seizures than adults did (median monthly seizure frequency 3.5 vs. 2.7, IRR 1.26; p < 0.001). Seizures demonstrated a circadian pattern (higher frequency between 07:00 a.m. and 10:00 a.m. and lower overnight), and seizures were reported differentially across the week (seizure rates higher Monday through Friday than Saturday or Sunday). Longer seizures (>5 or >30 min) had a higher proportion of the following triggers when compared with shorter seizures: “Overtired or irregular sleep,” “Bright or flashing lights,” and “Emotional stress” (p < 0.004). SIGNIFICANCE: This study explored a large cohort of patients with self‐reported seizures; strengths and limitations of large seizure diary databases are discussed. The findings in this study are consistent with those of prior work in smaller validated cohorts, suggesting that patient‐recorded databases are a valuable resource for epilepsy research, capable of both replication of results and generation of novel hypotheses.