Patterns of recording epileptic spasms in an electronic seizure diary compared to video EEG and historical cohorts

Abstract: Background Use of electronic seizure diaries (e-diaries) by caregivers of children with epileptic spasms is not well understood. We describe the demographic and seizure-related information of children with epileptic spasms captured in a widely used e-diary, and explore potential biases in how caregivers report these data. Methods We analyzed children with epileptic spasms in an e-diary, Seizure TrackerTM, from 2007-2018. We described variables including sex, time of seizure, percentage of spasms occurring as individual spasms (versus in clusters), cluster duration, and number of spasms per cluster. We compared seizure characteristics in the e-diary cohort to published cohorts to identify biases in caregiver-reported epileptic spasms. We also reviewed seizure patterns in a small cohort of children with epileptic spasms monitored on overnight vEEG. Results There were 314 children in the e-diary cohort and 9 children in the vEEG cohort. The e-diary cohort was more likely than expected to report counts divisible by five. The e-diary cohort had a lower proportion of nighttime spasms than expected based on data from published cohorts. The e-diary cohort had a significantly lower percentage of spasms as individual spasms, a greater number of spasms per cluster, and a greater cluster duration relative to the vEEG cohort. Conclusions Caregivers using e-diaries for epileptic spasms may miss individual spams, be more likely to report long clusters, round counts to the nearest five, and underreport nighttime spasms. Clinicians should be aware of these reporting biases when using e-diary data to guide care for children with epileptic spasms.