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

• 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
• 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

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，全世界有超过5000万人患有癫痫，其中大部分来自低血压病患者。 中等收入国家(LMIC)。尽管在治疗癫痫方面取得了进展(抗癫痫药物和其他 生物疗法)，许多癫痫(PWE)患者的生活质量(QOL)持续较差， 癫痫伴随着耻辱和精神健康的降低。癫痫控制不良的危险因素包括； 有限的社会支持，不良的服药依从性，耻辱以及抑郁症和毒品等共病 虐待。癫痫患者，特别是在LMIC环境中的患者，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并加剧了 癫痫症状和不良生活质量与癫痫有关。 实施癫痫自我管理，纳入持续的治疗评估 响应是本应用程序的重点。此应用程序是为响应PAR-22-097 Global Brain和 神经系统疾病研究贯穿整个生命周期，并建立在有希望的试点工作的基础上，在这些工作中 研究小组采用并利用了一种文化上可接受的指导性自我管理课程，称为自我管理 乌干达癫痫患者的管理和不良健康事件史(SMART-U)。 研究小组的初步工作表明，SMART-U具有很好的参与者可接受性，可接受率为87.5% 保持2年以上，并与改善生活质量和减少耻辱、抑郁和癫痫有关 频率在严格控制下缺乏可证明的疗效，这使得进行有效的随机对照试验是合理的。 以试点结果为基础，看看SMART是否为PWE增加了增量临床结果。 拟议的项目将完善SMART-U干预，并确保广泛的可接受性 然后测试SMART-U干预在改善生活质量和 减少癫痫发作频率、耻辱和抑郁，并在两个地点进行前瞻性、104个月的随机试验 对照试验(RCT)。我们亦会调查透过流动电话传送的短讯服务的使用情况。 手机短信验证患者自我报告的癫痫发作情况，并推送癫痫自我管理消息 在LMIC中以SMART与Etau的实用/可访问格式。与福格蒂国际中心(FIC)保持一致 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 为未来癫痫减负提供研究能力。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，以促进未来在乌干达癫痫患者中扩大SMART 合伙人。综上所述，拟议的项目具有重大的公共卫生重要性，并将提供 帮助减轻乌干达和其他低收入国家癫痫负担所需的先决条件数据和基础设施 在全球各地。