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

项目总结/摘要 癫痫是一种常见的神经系统疾病，影响全球超过5000万人，其中大多数来自低- 中等收入国家（LMIC）。尽管癫痫的治疗取得了进展（抗癫痫药物和其他药物）， 尽管目前的治疗方法（如生物疗法），许多癫痫患者（PWE）的生活质量（QOL）仍然很差， 癫痫与耻辱和精神健康下降有关。癫痫控制不佳的风险因素包括： 有限的社会支持，药物依从性差，耻辱和抑郁症和物质等合并症 虐待癫痫患者，特别是在LMIC环境中，面临着额外的挑战，如社会孤立， 获得护理的机会有限，对癫痫的认识水平低，所有这些都阻碍了寻求帮助， 癫痫症状与癫痫患者生活质量差有关。 实施癫痫自我管理，包括持续评估治疗 响应是本应用的重点。此应用程序是为了响应PAR-22-097全球大脑而编写的， 神经系统疾病的研究在整个生命周期，并建立在有前途的试点工作，其中这 研究小组采用并利用了一种文化上可接受的自我管理指导课程， 乌干达癫痫患者和不良健康事件史的MANICLE（SMART-U）。 该研究小组的初步工作表明，SMART-U具有良好的参与者可接受性，87.5% 保持超过2年的时间，并与改善QOL和减少耻辱，抑郁和癫痫发作相关 频率.在严格对照下缺乏可证实的疗效使得疗效RCT似乎是合理的 以试点结果为基础，看看SMART是否为PWE增加了增量临床结局。 拟议的项目将完善SMART-U干预措施，并确保广泛的可接受性。 乌干达癫痫患者，然后测试SMART-U干预对改善生活质量的影响， 减少癫痫发作频率、耻辱感和抑郁，在一项两个地点、前瞻性、104个月随机 对照试验（RCT）。我们还将调查通过移动的传送的短消息服务（SMS）的使用情况 电话文本，以验证患者自我报告的癫痫发作发生率，并推送癫痫自我管理消息 在SMART与LMIC中的eTAU中以实用/可访问的格式。福格蒂国际中心（FIC） 和国家神经疾病和中风研究所（NINDS）的优先事项，该提案将建立关键的 为未来减轻癫痫负担提供研究能力。最后，该项目将提高癫痫研究能力 并帮助建立可持续的基础设施，以促进未来在乌干达癫痫患者中扩大SMART的规模 伙伴综合而言，拟议工程计划对公众健康十分重要， 帮助减轻乌干达和其他中低收入国家癫痫负担所需的先决条件数据和基础设施 遍布地球仪。

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.