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

减轻乌干达癫痫患者癫痫负担的自我管理干预措施

基本信息

批准号：
10740917
负责人：
Mark Kaddumukasa
金额：
$ 39.08万
依托单位：
MAKERERE UNIVERSITY COLLEGE OF HEALTH SCIENCES
依托单位国家：
美国
项目类别：
财政年份：
2023
资助国家：
美国
起止时间：
2023-08-01 至 2028-07-31
项目状态：
未结题

来源：
https://reporter.nih.gov/project-details/10740917
关键词：
Adherence Adopted Adverse effects Affect Africa South of the Sahara Age Anticonvulsants Antiepileptic Agents Awareness Benchmarking Biological Response Modifier Therapy Brain Cellular Phone Characteristics Chronic Disease Clinical Clinical Trials Design Collaborations Competence Data Education Educational Curriculum Ensure Environment Epilepsy Evaluation Event Face Family Fogarty International Center Frequencies Future Goals Health Health Services Accessibility Hybrids Individual Infrastructure Intervention Longevity Mental Depression Mental Health Methodology Methods Monitor National Institute of Neurological Disorders and Stroke Neurologic Neurology Outcome Outcome Assessment Participant Patient Self-Report Patients Persons Pilot Projects Productivity Proliferating Promoting Action on Research Implementation in Health Services framework Public Health Quality of life Randomized Randomized, Controlled Trials Recording of previous events Reporting Research Research Personnel Residencies Resource-limited setting Resources Risk Factors Rural Sampling Seizures Self Efficacy Self Management Site Social isolation Social support Substance abuse problem Symptoms Testing Text Text Messaging Training Uganda Well in self Work Writing behavior change brain health comorbidity comparative efficacy effectiveness/implementation design efficacy evaluation evidence base follow-up functional status health related quality of life help-seeking behavior implementation design implementation science improved innovation low and middle-income countries mHealth medication compliance nervous system disorder next generation primary outcome prospective response scale up secondary outcome self-management program sex social stigma standard of care treatment as usual treatment response work-study

项目摘要

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.

项目摘要/摘要癫痫是一种常见的神经系统疾病，影响了全世界超过5000万人，多数来自低 - 中收入国家（LMIC）。尽管在治疗癫痫（抗癫痫药和其他治疗）方面取得了进步生物疗法），许多患有癫痫病（PWE）的人继续生活质量差（QOL）癫痫症的污名和心理健康减少。控制不良的癫痫病风险因素包括；社会支持有限，药物依从性不佳，污名和合并症（如抑郁和底物）虐待。癫痫患者，尤其是在LMIC环境中，面临社会隔离等其他挑战，有限的护理机会和低水平的癫痫意识，所有这些都阻碍了寻求帮助和加剧癫痫症状和与癫痫有关的生活质量差。实施癫痫的自我管理，包括对治疗的持续评估响应是此应用程序的重点。该应用程序是根据PAR-22-097全球大脑和神经系统疾病在整个生命周期中进行研究，并以此为基础研究小组通过并利用了一种文化可接受的指导自我管理课程，称为自我 - 癫痫患者的管理和乌干达（SMART-U）负面健康事件的历史。该研究团队的初步工作表明，SMART-U具有良好的参与可接受性，其中87.5％在2年内保留，与QoL的改善和污名化，抑郁和癫痫发作有关频率。在严格控制下缺乏可证明的效率，因此对于效率RCT而言是合理的以试点调查结果为基础，以查看SMART是否为PWE添加了增量的临床成果。拟议的项目将完善SMART-U干预措施，并确保广泛的可接受性有癫痫病的乌干达人，然后测试Smart-U干预对改善生活质量和降低癫痫发作频率，污名和抑郁症以及两个地点，前瞻性，104个月的随机分组对照试验（RCT）。我们还将调查通过手机提供的简短消息服务（SMS）的使用电话文本以验证患者自我报告的癫痫发作并推动癫痫自我管理消息传递在LMIC中，以实用/可访问的格式与Etau中的格式。与Fogarty International Center（FIC）一致国家神经系统疾病与中风研究所（NINDS）的优先事项，该提案将建立关键未来癫痫伯恩减少的研究能力。最后，该项目将提高癫痫的研究能力并帮助建立可持续的基础设施，以促进乌干达的Smart smart a癫痫合作伙伴。综上所述，拟议的项目具有很大的公共健康重要性，并将提供必要的数据和基础设施需要帮助减少乌干达和其他LMIC的癫痫的燃烧在全球。