Pilot testing an epilepsy self-management and resilience smartphone application for adolescents and young adults in Uganda

OBJECTIVE: People with epilepsy in Uganda face substantial barriers to accessing culturally relevant self-management support. We developed the Self-Management and Resilience Tracking Application (SMART App) to address this gap in existing epilepsy self-management tools by integrating routine epilepsy self-management support with resilience tracking and resilience promoting activities. The application was designed within Uganda's local cultural, social, and healthcare context. Pilot testing examined user engagement, usability, and participant feedback to inform refinement of the app in preparation for a future trial to demonstrate effectiveness. METHODS: We conducted a 45-day mixed-methods pilot test of the SMART App among 60 adolescents and young adults with epilepsy in Uganda. The app is available in English, Luganda and Runyankore, two major local Ugandan languages. Engagement analyses were restricted to the first 30 days due to unreliable phone data availability for the final 15 days. Quantitative engagement measures were assessed using in-app usage logs. Usability was assessed using an adapted version of the Adapted Usability Scale. Pre- to post- changes in reported coping strategies, social support use, seizure-tracking habits, medication adherence, and stress-management were explored. Qualitative data were collected through individual interviews and focus group discussions (n = 56). RESULTS: App uptake was 100 %, and no attrition due to non-use was observed. Over 30 days, the median number of unique login days was 20.5 (IQR, 8-25), and the median time from onboarding to last recorded use was 26 days (IQR, 22-28). Thirteen participants (21.7 %) had minimal use, 21 (35.0 %) moderate use, and 26 (43.3 %) high use. Feature uptake was highest for resilience tracking (91.7 %), followed by medication tracking (81.7 %) and seizure tracking (70.0 %). Usability responses were most favorable for ease of use, information retrieval, and user confidence, but were more mixed for learnability, organization, and intended frequency of use. Mean self-reported seizure-tracking scores were higher at follow-up than baseline (2.71 vs 3.32; mean difference 0.61, 95 % CI 0.15-1.07; P = 0.010), as were stress-management scores (2.98 vs 3.63; mean difference 0.65, 95 % CI 0.30-1.00; P= 0<.001). Participants shared how the app influenced their understanding of epilepsy, their evaluation of resilience features, and recommended additional tracking options, visual summaries, and expanded content. Participants illustrated the app's potential effects on epilepsy literacy and stress management, and to generate a more hopeful, contextualized understanding of epilepsy. CONCLUSION: The SMART App demonstrated feasibility and high user acceptability with a particularly strong uptake of its resilience tracking feature. By integrating epilepsy self-management with resilience building support, the app offers a promising approach to addressing symptoms of distress, social isolation, and stigma among people with epilepsy. Findings support targeted refinement of app content and functionality, followed by prospective evaluation.