Abstracts

Rationale: Self-management is key to achievement of epilepsy-related outcomes, including quality of life and seizure control. Current epilepsy self-management interventions are somewhat limited by their sustainability and scalability. There is a need for highly sustainable and scalable interventions to improve the ability of people with epilepsy (PWE) to self-manage. Web-based interventions are among the most sustainable and scalable, but patient preferences for receiving web-based content have not been investigated in PWE. As we move toward the development, testing, and translation of web-based self-management interventions for PWE, it is important to investigate patient preferences for online intervention content delivery in PWE; doing so will ensure that not only intervention content, but also delivery of that content, is patient-centered. Methods: Focus group methods were utilized. Four focus groups consisting of five adult PWE each were implemented. Inclusion criteria consisted of: 1) diagnosis of epilepsy; 2) taking at least one anti-seizure drug; 3) age 18 years or older; 4) able to speak and read English; 5) reliable access to the internet; and 6) cognitive capacity to engage in a focus group. The focus groups were held virtually using the video conferencing system Zoom and lasted 90 minutes. Participants were shown examples of content (articles, videos, blogs, podcasts that were health-related but not all epilepsy-related), and asked to discuss their preferences for receiving epilepsy-related content. Sessions were recorded, transcribed, and analyzed using content analysis. Results: Twenty adult PWE took part in the focus groups. There were 13 women and 7 men. The average age was 31 (range 18-54). Findings indicate that purely text (written articles) content forms are the least desirable to PWE, unless in the form of a blog from a peer with epilepsy. Participants expressed that the most desirable form of content is one that is comprised of the following characteristics: easy to consume (easy to access and "play," and easy to understand), brief (requires no more than 3 minutes to consume per piece of content), includes minimal text, is from the perspective of an expert (nurses, physicians, and social workers) or peer with epilepsy, and includes video and/or audio. All participants indicated that they would be interested in listening to podcasts involving experts and peers with epilepsy, up to 30 minutes in length, as well as in viewing interviews of experts and peers, so long as the videos are well made and easy to understand. Members of all focus groups indicated that they would especially like to hear stories from other PWE about managing epilepsy. Interestingly, many in the focus groups indicated that they are more likely to consume video content if it is accompanied by music in the background, and is well-edited. The focus group members all suggested that "professional" grade audio and video content was most useful to them. All but four participants indicated that they prefer content to be deliverable via smartphone. Two participants indicated that they would like the ability to print out information given to them by other methods. Conclusions: Results of this study indicate that the content preferences of PWE differ from traditional methods used, and also that they are interested in hearing from peers with epilepsy in addition to experts. Fortunately, the format of content preferred by PWE is achievable using current technology. Current findings are significant in that they inform researchers developing self-management interventions of ways in which to format their content to make it optimally patient-centered, and thus consumable, for PWE. Funding: This work was supported by the Indiana University School of Nursing Ethel Clarke Fellowship Award.