Self-management Intervention for Reducing Epilepsy Burden among Ugandans with Epilepsy

PROJECT SUMMARY/ABSTRACT Epilepsy is a common neurological disorder affecting over 50 million people worldwide, with majority from low- middle income countries (LMICs). In spite of advances in treatment of epilepsy (anti-epileptic drugs and other biological therapies), many people with epilepsy (PWE) continue to have poor quality of life (QOL), suffer from epilepsy associated stigma and diminished mental well-being. Risk factors for poorly controlled epilepsy include; limited social support, poor medication adherence, stigma and comorbidities like depression and substance abuse. People with epilepsy, especially in LMIC settings, face additional challenges such as social isolation, limited access to care and low levels of epilepsy awareness, all of which impede help-seeking and exacerbate epilepsy symptoms and poor quality of life related to epilepsy. Implementation of epilepsy self-management which incorporates ongoing assessment of treatment response is the focus of this application. This application is written in response to PAR-22-097 Global Brain and Nervous System Disorders Research Across the Lifespan, and builds upon promising pilot work in which this study team adopted and utilized a culturally acceptable guided self-management curriculum called Self– MAnagement for people with epilepsy and a histoRy of negative health evenTs in Uganda (SMART-U). Preliminary work by this study team suggests that SMART-U has excellent participant acceptability, with 87.5% retention over a 2-year period, and is associated with improved QOL and reduced stigma, depression and seizure frequency. The lack of demonstrable efficacy under rigorous control makes it plausible for an efficacy RCT building on pilot findings to see if SMART adds incremental clinical outcomes to PWE. The proposed project will refine the SMART-U intervention and ensure acceptability across a broad range of Ugandans with epilepsy and then test the effects of SMART-U intervention in improving quality of life and reducing seizure frequency, stigma and depression and in a two site, prospective, 104–month randomized controlled trial (RCT). We will also investigate the use of short message service (SMS) delivered via mobile phone text to validate patient self-reported seizure occurrence and push epilepsy self-management messaging in a practical/accessible format in SMART vs. eTAU in an LMIC. In line with Fogarty International Center (FIC) and National Institute of Neurological Disorders and Stroke (NINDS) priorities, the proposal will build critical research capacity for future epilepsy burden reduction. Finally, the project will grow research capacity in epilepsy and help establish sustainable infrastructure that will facilitate future scale up of SMART in Uganda with epilepsy partners. Taken together, the proposed project has substantial public health importance and will provide prerequisite data and infrastructure needed to help reduce the burden of epilepsy in Uganda and other LMICs across the globe.