Abstracts

Rationale: My Epilepsy Diary (http://www.epilepsy.com/seizurediary) is a free web-based application, on the public website epilepsy.com available for patients to track their epilepsy and to aid clinicians with data-based, individualized epilepsy management. The first aim of this descriptive study is to outline the various functions of the electronic diary. Secondly, the study retrospectively describes the profile of a large cohort of diary users including demographics, prevalence of seizure types, temporal distribution of seizures, seizure triggers, and use and side effects of anti-epileptic medications.Methods: This was a retrospective, descriptive study of the database of My Epilepsy Diary users comprising data entered for the 2010 calendar year. Data logged by active users during 2010 was downloaded into spreadsheets and tabulated.Results: In 2010, a total of 1,944 users provided demographic information and 1,877 users logged seizure data. The majority of users were women at 64% and the average age was 29.9 16.0 years. A total of 70,990 seizure entries and 15,630 anti-epileptic medication entries were logged. Events were apportioned as 79% seizures and 21% seizure clusters. Partial seizures accounted for 58%, generalized seizures comprised 28% of seizure types and 15% were unclassifiable. Specific anti-epileptic drug (AED) regimens were detailed in 7,331 entries and 18% of users were managed on monotherapy; whereas, 82% were on polytherapy. Mood related side effects were the most commonly reported in 19% of 1,027 users.Conclusions: This study demonstrates feasibility of tracking a population of individuals with epilepsy by an on-line diary. The primary purpose of the diary was assistance with clinical care, but a conglomerate set of anonymous data permits a snapshot of characteristics of a segment of the epilepsy community.