Abstracts

Rationale: Understanding what people do to manage epilepsy is critical to improving epilepsy care. Tracking and recording seizures, managing treatments and side effects, communicating with the health care team, and providing seizure first aid are common strategies taught by health care professionals. While survey data offers insights into patient experiences or feelings, they do not observe and describe actual behaviors. An online epilepsy diary offers a unique way of assessing patient self-report of symptoms as well as behaviors used to track and treat their symptoms. Methods: This study examined the experiences and self-management behaviors of people with seizures using an online epilepsy diary. The My Epilepsy Diary, found on the epilepsy.com website, allows users to record their medical history and ongoing seizures, symptoms and treatments. Users may create reports and action plans, view data in narrative or graph form, and set reminders to enhance compliance. Since its inception, 5,885 user accounts have been created. A cross-sectional and retrospective approach was used with a convenience sample of all diary accounts (n=452) accessed between May 2 and June 2, 2010. De-identified data were analyzed retrospectively to examine the number of transactions for specific areas and the most frequently reported symptoms, medicines and behaviors. The use of antiepileptic drugs (AEDs) was determined by looking at the number and type of AEDs during one day of the study period. This method was employed to prevent inaccurate reporting of AEDs for patients who may have changed drugs during the study period. Most transactions were entered via the website (n=7,399), while the newer iphone/itouch method was used for 1,199 transactions. Results: Seizures were recorded by 77.8% of users; 75.4% of 452 users recorded 11,568 individual seizures and 27.3% recorded 2,226 seizure clusters since they started their diaries. The most frequently used AEDs included levetiracetam, lamotrigine, carbamazepine, and sodium valproate. Only 22 to 31% of patients took these AEDs as monotherapy. The online epilepsy diary lets users track their medication usage; 44% used the diary to note that they took their AEDs, while 9.3% noted missed meds and 8.8% took extra AEDs at times. 121 tracked side effects in their diary; the most frequent ones occurred in 22% or more (of 121) and included behavior/mood changes, sleepiness, cognitive problems, dizziness, and headaches. One quarter of diary users (n=114) sent email(9.7%) or text messages(15.9%) as reminders to take AEDs doses. Further data analysis explores the stability of group data by evaluating trends of diary users at different time intervals and examines usage of other self-management tools in the My Epilepsy Diary. Conclusions: The use of this online seizure diary captures experiences of people with epilepsy as they happen. What users do to manage their epilepsy, rather than what may be recommended, can be examined in a large sample of diary users. The diary can serve as a clinical tool to enhance self-management behaviors critical for effective epilepsy care.