OBJECTIVE Racial and ethnic disparities in epilepsy outcomes are well documented, but underlying mechanisms remain incompletely understood. We examined disparities in health status, health literacy, and healthcare access among adults with epilepsy and assessed the contribution of socioeconomic status (SES). METHODS Adults with epilepsy were identified from the All of Us Research Program Controlled Tier Curated Data Repository (v2024Q3R9) using SNOMED and OMOP concepts. Participants were categorized as non-Hispanic White (NHW), non-Hispanic Black (NHB), or Hispanic/Latino (HL). Multivariable logistic regression adjusted for age, sex, education, and income to estimate adjusted odds ratios (aORs) for health status, health literacy, and healthcare barriers. Counterfactual mediation analysis with 1,000 bootstrap simulations estimated the proportion of disparities attributable to SES. RESULTS Among 10,095 adults with epilepsy (NHW, n = 5,690; NHB, n = 2,426; HL, n = 1,979), NHB and HL participants had greater socioeconomic disadvantage and higher unadjusted burdens of poor health, limited health literacy, and healthcare barriers. After adjustment, HL participants had higher odds of difficulty understanding health information (aOR, 1.55; 95% CI, 1.26-1.92), needing assistance with health materials (aOR, 1.50; 95% CI, 1.25-1.79), severe pain (aOR, 1.44; 95% CI, 1.24-1.67), and difficulty affording follow-up care (aOR, 1.62; 95% CI, 1.19-2.19). SES accounted for 50-72% of disparities in health literacy and 60-70% of disparities in severe pain. CONCLUSION SES explains a substantial but incomplete proportion of racial and ethnic disparities among adults with epilepsy. Interventions addressing socioeconomic disadvantage, health literacy, language-concordant care, and structural barriers may help reduce persistent inequities. LOE: III.
Objectives Questions tell us what people with epilepsy want to know, but not what they live through. Building on previous analyses of patient-generated questions about epilepsy, this study explored whether creative engagement workshops illuminate the lived experiences that underlie information-seeking. We explored whether this approach could provide insights to guide the design of digital and other support resources that better meet patients’ needs. Methods Twenty-two participants (12 adults with epilepsy and 10 carers/family members) attended two co-facilitated creative engagement workshops. Qualitative data from creative outputs, facilitated discussions, field notes and evaluation feedback were analysed using reflexive thematic analysis. Findings were interpreted alongside a previous analysis of 2,752 epilepsy-related questions submitted to online forums. Results Two lived-experience themes emerged: living with uncertainty and adaptation and identity. Participants described uncertainty about seizures as a pervasive influence on daily life, while many discussed adapting to epilepsy and maintaining independence and identity. Family members highlighted the broader impact on carers and family life. Peer connection and shared discussion during the workshops were consistently valued, with many describing reduced isolation and increased validation through contact with others affected by epilepsy. Conclusions Patient-generated questions identify information needs, whereas creative engagement methods illuminate the emotional and social experiences in daily life underlying those needs. This richer understanding can guide the development of more authentic and patient-centred care. The development of online versions of the creative workshops is now underway, aiming to extend access to the benefits observed in this pilot study.
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.
BACKGROUND Caregiver knowledge and attitudes are critical to effective pediatric epilepsy management, yet misconceptions about seizure safety, treatment options, and long-term outcomes remain common. The Epilepsy Monitoring Unit (EMU) provides a unique opportunity for real-time education during diagnostic evaluation and clinical care. OBJECTIVE To assess changes in epilepsy-related knowledge and attitudes among caregivers of pediatric patients during a short-term EMU admission. METHODS This prospective pre-post observational study enrolled caregivers of children aged 2-18 years admitted to the EMU at Nemours Children's Hospital for epilepsy-related diagnostic evaluation or management. Caregivers completed the 16-item Epilepsy Knowledge Scale (EKS) and 14-item Epilepsy Attitude Scale (EAS) shortly after admission and again prior to discharge in English or professionally translated Spanish. Routine education occurred during bedside rounds without a structured study intervention. Paired analyses were used to compare pre- and post-stay scores, and item-level changes were assessed using exact McNemar tests, with Benjamini-Hochberg false discovery rate correction as a sensitivity analysis. RESULTS Of 63 caregivers approached, 57 completed both pre- and post-surveys, yielding a response rate of 90.5 %. The mean EMU length of stay was 1.74 ± 1.29 days. Mean EKS scores increased from 7.33 ± 2.02 at baseline to 10.07 ± 1.83 at discharge, representing a mean increase of 2.74 points (95 % CI: 2.03-3.44p < 0.001) and an effect size of Cohen's dz = 1.03. Median EAS scores increased from 39 (IQR: 35, 41) to 40 (IQR: 37, 42; p < 0.001; r = 0.48). Item-level results were mixed, and four of 16 EKS items remained significant after false discovery rate correction; no individual EAS item remained significant after correction. CONCLUSIONS Caregiver knowledge and overall attitude scores improved during a brief pediatric EMU admission. Because this was an uncontrolled observational study without a standardized educational intervention, the observed changes cannot be attributed specifically to routine education. Test-retest effects and language-related measurement differences are also possible. These findings support prospective evaluation of structured, standardized caregiver education integrated into EMU care.
