Abstracts

Rationale: Electronic seizure diaries have now been in use for many years, allowing people with epilepsy and their families or caregivers to track their condition. The My Seizure diary (diary.epilepsy.com) is sponsored by the Epilepsy Foundation, and there have now been over 55,000 accounts created in the past 10 years. The aim of this descriptive analysis is to retrospectively review the My Seizure Diary cohort for tracking as it relates to cluster seizure reporting. Cluster seizures are becoming increasingly recognized as an awareness and treatment gap in the epilepsy community 1-2. Understanding self-reported cluster data may improve our understanding of clusters from the patient/family perspective and the scope of the problem. Methods: This work was a retrospective study of the database of the My Seizure Diary, focusing on the overall population usage of the diary and self-report metrics related to seizure clusters. A database query was conducted and analyzed in April 2019, assessing both all-time and one-year time points. A comparative analysis was also conducted against a one-time query from May 2018. Results: As of April 2019, there are 29,286 seizure diaries with data actively entered; this represents an increase of 9.6% compared with the query from May 2018 (26,728). The number of diaries with active data entry in the year prior is 3,525, also representing a 9.7% increase (from 3,212). Overall, 9.5% of all diary users have reported data using the cluster feature of the seizure-reporting tool. A total of 40,202 cluster events have been reported overall, representing an 11.8% increase from 2018 (35,952). In the past year alone, 4,303 cluster events have been entered by users, compared with 3,250 when the data was analyzed in 2018 (a 32.4% increase).For users reporting cluster events, the mean number of seizures per cluster was 4 (range 1-200) with a SD of 6.6. Of these patients, only 24% have entered a rescue medication into the diary, and only 4.6% reported the use of a rescue medication within 24 hours of a cluster event report. Additionally, only 8.4% of users reporting cluster events have entered a seizure response plan into the diary. Conclusions: User growth of the My Seizure Diary continues to expand, but relatively low numbers of people reported seizures using the cluster tool. This may reflect published literature regarding gaps and confusion about the definition of cluster seizures and/or the ability to recall and record these events 1-2. The self-reporting of rescue therapies (prescriptions and usage), while seemingly low, are consistent with published data as well. This data further supports the existence of a knowledge and treatment gap regarding the identification of seizure clusters and planning, including the creation and sharing of a seizure response plan. Electronic seizure diaries such as the Epilepsy Foundation’s My Seizure Diary offers a way to educate people with epilepsy and families as well as track trends and response to therapy if used properly.References:1. Detyniecky K, et al. Prevalence and predictors of seizure clusters: a prospective observational study of adult patients with epilepsy. Epilepsy & Behavior 88 (2018): 349-356.2. Jafarpour S, et al. Seizure cluster: definition, prevalence, consequences, and management. Seizure 68 (2019): 9-15. Funding: No funding