Electronic seizure diaries for clinical care and research

Abstract

Objective: People with epilepsy often record their seizures in diaries. While seizure diaries can be kept using paper and digital notes or calendars, electronic seizure diary services are available on web browsers and mobile apps. Benefits of these electronic diaries include standardized data collection, data backup and protection, long-term trending, and data accessibility to providers or research groups. The major electronic seizure diary services have not recently been systematically evaluated or compared.

Methods: We evaluated nine electronic seizure diaries selected based on popularity and prevalence in the literature. Diaries were tested from both the user and provider perspectives.

Results: A review of nine commonly used seizure diary services that we could identify showed variability in features offered. All services provide a seizure log with inputs for date and seizure type along with a combination of other features such as duration, intensity, trigger, recovery, mood, and description. Other notable features included in some, but not all diary services are: the ability to track medications, missed doses, sleep, menstrual cycles, and other possible triggers; provider accounts to share data; the ability to report clusters and seizure severity; an option for medication reminders; user-friendly trending of long-term data in relation to changes in treatment; and the ability to export data for research.

Significance: Having electronic diaries that allow patients to log seizures quickly and accurately can improve the quantity and quality of data, which can be used both for clinical and research benefit.

Keywords: epilepsy; patient-reported outcomes; mobile apps; seizures; diaries.