Abstracts

Rationale: Depression occurs in up to 23.1% of patients with epilepsy and is often under-detected and under-treated. Online interventions are a promising opportunity to provide patients with an accessible "first-step" strategy to effectively manage their depression, but few online resources specifically address the needs of patients with both epilepsy and depression. The overall aim of this study was to engage end-users in developing an online hub (eHub) to help persons with epilepsy manage their depression. The philosophy of an eHub is to connect users to high quality, evidence-based, and centralized resources. The study sought to: 1) identify facilitators and barriers to accessing resources related to management of epilepsy and/or depression; 2) determine how depression influences the use of online resources in people with epilepsy; and 3) discuss gaps in available resources (free and in the public domain) and 4) suggestions for future content. Methods: Qualitative methods were used. Semi-structured interviews were conducted with ten persons with epilepsy and a history of depression in the past two years. Using inductive analysis, two team members engaged in a process of textual open-coding utilizing a conventional content analysis approach whereby content was conceptually clustered based on the research questions. A phenomenological framework was applied to describe the phenomenon of online health resource access and utilization from the perspective of persons with epilepsy. Results: 1) Reported facilitators to use of online resources included credibility of the information (e.g. from a well-recognized academic institution), as well as thoughtful organization and accessibility of resources. Barriers to accessing trusted and up-to-date resources included inability to use computers due to the risk of triggering a seizure and finding and piecing together information from many different sites. 2) Patients reported difficulty having the motivation to seek out resources while depressed, which was compounded by feelings of stigma, social isolation, and lack of control. 3) Gaps in resources included a lack of information about living with epilepsy day-to-day and a lack of resources for their family and friends. 4) Additional content for an eHub that participants suggested included information to raise awareness about epilepsy and depression; questionnaires to detect symptoms of depression; stories of other patients with epilepsy and depression via video or moderated forums; current research and news about epilepsy and depression; local community resources; and tools and strategies to manage depression in epilepsy. Conclusions: There is a dearth of accessible, trusted and publicly available resources for patients with epilepsy and depression, which is compounded by difficulty in searching out information in the setting of depression. Our results will guide the development of a patient-oriented, accessible, and user-friendly eHub of evidence-informed resources to address the needs specific to patients with epilepsy and depression. Funding: Mathison Health Centre, Hotchkiss Brain Institute, and Pfizer