Abstracts

Rationale: Differences in perspectives of cluster seizures and use of rescue therapies between patients, families, and health care providers has been documented in online community forums and previous qualitative work defining seizure burden. While the term “cluster seizures” is used by people with epilepsy and families more often than other terms, there is no clear definition of what the term implies. Additionally, there is no accepted agreement on what the term “rescue therapies” means or when they should be used. As part of a consensus project to identify best practices for rescue therapies in epilepsy, additional input from people with epilepsy and their families was sought. Methods: An 11 item survey was developed to assess respondent’s perceptions of seizure control, fear of seizures, past and current use of rescue medication for seizures, reasons for use of rescue medications, and terms used to describe when rescue medicines are used. A convenience sample was used consisting of 433 visitors to epilepsy.com who responded to the survey request in an epilepsy.com article or social media post. The survey was posted between April 12 and April 30, 2019. Results: Data was analyzed from 397 respondents who had complete responses and identified as a person with epilepsy (36%) or family member (61%). Seizures began over 6 years ago in 204 (52%) and 85 (22%) had new onset seizures (onset < 2 years ago). Despite seizures perceived as well-controlled by about 36%, 69% reported using a rescue medicine to stop or prevent seizures. Twenty-eight percent had never been prescribed or given instructions for a rescue medicine. Almost everyone (93%) who had used a rescue medicine in the past still used one. Many people felt that their seizures occurred with identifiable situations such as high risk times (57%) or associated with certain situations or things in life (49%). Most common terms that reflected when rescue medicines were used included: cluster seizures or seizure clusters (50%), long seizures (50%), or prolonged seizures (43%), though many other terms were used as well. Limitations: The use of a convenience sample of users from epilepsy.com, the website of the Epilepsy Foundation, limits the generalizability of these findings. People who do not access online information or seek information from other websites may have different experiences. Epilepsy.com receives almost 1 million users a month, 68% of which are new users to the site. Data is not available to determine how long they have had epilepsy or other epilepsy information. Conclusions: People responding to a survey from the Epilepsy Foundation reported relatively high use of rescue therapies (69%), despite one-third of respondents reporting well-controlled seizures. Many people report times that may trigger seizures suggesting possible preventative ways of using rescue therapies. While many terms are used to describe when rescue therapies may be used, cluster seizures/seizure clusters and long seizures are reported most often. This data offers additional evidence of patient/family perspectives to assist in developing best practices for use of rescue therapies. Funding: Funding for consensus project on best practices for rescue therapies provided by Aquestive, Neurelis, UCB, and Engage Therapeutics.