Epilepsy in Uganda: Clinical characterization and co-morbidities, their relation to stigma among adolescents and impact of a community-based engagement program (AWE Change project)

乌干达的癫痫：临床特征和合并症、它们与青少年耻辱的关系以及基于社区的参与计划的影响（AWE Change 项目）

• 批准号: 10687256
• 负责人: Angelina Mwesige Kakooza
• 金额: $ 53.48万
• 依托单位: MAKERERE UNIVERSITY COLLEGE OF HEALTH SCIENCES
• 依托单位国家: 美国
• 财政年份: 2021
• 资助国家: 美国
• 起止时间: 2021-09-17 至 2026-08-31
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10687256
• 关键词: Achievement; Address; Adolescent; Adult; Affect; Africa South of the Sahara; Anticonvulsants; Anxiety; Attitude; Behavior; Birth trauma; Brain; Brain Diseases; Burn injury; Caregivers; Caring; Characteristics; Child; Classification; Clinic; Clinical; Communities; Corrosives; Coupled; Development; Discrimination; Emotional; Epilepsy; Exposure to; Foundations; Frequencies; Goals; Health; Health Policy; Individual; Infrastructure; International; Intervention; Knowledge; Longevity; Malnutrition; Medical; Mental Depression; Mental Health; Methods; Neurocognitive Deficit; Occupational; Occupational Status; Outcome; Output; Participant; Patients; Perception; Personal Satisfaction; Persons; Pharmaceutical Preparations; Population; Prevention strategy; Probability; Psyche structure; Public Health; Quality of life; Random Allocation; Reporting; Research; Resource-limited setting; Resources; Rest; Risk; Risk Factors; Sampling; Seizures; Severities; Severity of illness; Stigmatization; Subgroup; Sustainable Development; Testing; Translating; Uganda; Universities; Vulnerable Populations; Work; World Health Organization; Writing; burden of illness; care outcomes; care seeking; cohort; community engagement; comorbidity; cost; design; developmental disease; disability; experience; functional outcomes; functional status; genetic risk factor; improved; innovation; meetings; mortality; nervous system disorder; prevent; programs; psychiatric comorbidity; psychosocial; response; social; social exclusion; social stigma; suicidal; vulnerable adolescent

Abstract/Project Summary: Epilepsy is one of the oldest, common, neurological disorders known to mankind, contributing approximately 0.5% to the total global burden of disease. The majority of affected individuals (>80%) live in low resource settings such as is found in Uganda, with the poor most at risk in view of their high exposure to other co-existing conditions associated with epilepsy, as well as limitations in accessing appropriate care. Only an estimated 1 in 5 PWE in sub Saharan Africa (SSA) are able to access the appropriate treatment of epilepsy with anti-seizure medications. The combination of challenges in accessing appropriate care, with practically universal discrimination and stigma associated with epilepsy, has led to subsequently high levels of preventable disability, social exclusion, and negative mental health outcomes in people with epilepsy (PWE). Almost a half of PWE are burdened with other coexisting medical conditions that worsen their quality of life, impact on the mental, physical, social and emotional development and general wellbeing. Therefore, achievement of Universal Health Coverage and the Sustainable Development Goals will be elusive without concerted efforts to prioritize epilepsy in national public health agendas through sustained and coordinated action. The long-term aim of the proposed international collaborative effort is to reduce the public health burden and the impact of epilepsy stigma in Uganda so as to yield innovative, transferable knowledge and care gains. Our preliminary work has engaged a randomly selected national community cohort, 732 of which are probable PWE. In our initial aim we will utilize a cross sectional comparable design to clinically characterize this sample and matched controls to inform our understanding of the manifestation and impact of epilepsy across the lifespan in Uganda. Characterization will include: ILAE classification epilepsy subtype, seizure frequency and severity, and illness duration. Environmental (birth injuries, malnutrition) and genetic risk factors will be explored. Comorbidities will include primarily psychiatric and psychosocial outcomes (depression, suicidality, anxiety, Quality of life (QOL), and perceived stigma) but will also include key health comorbidities (burns, developmental disorders, and neurocognitive deficits). Finally, academic progress and occupational engagement will be ascertained. In the second aim, using a mixed-methods approach we will define the impact of stigma on the highly vulnerable adolescent with epilepsy (AWE) population, and also expose the key drivers of stigma in the community. Further clarification will be made to explain how community misconceptions about epilepsy interact with specific patient characteristics and impacts to increase risk for or mitigate stigma, which in turn impact QOL outcomes. Finally, employing an innovative blend of scientific and change management principles we will engage a targeted community of AWE and their caregivers to co-create, pilot, refine, and test unique stigma reduction programs. Through various meetings with relevant national and community stakeholders we will identify community values, resources, and networks. Through sharing of information and perspectives, proposed stigma reduction programs which resonate with the priorities and culture of the community will be generated. After vetting to select the most promising use of resources, programs will be piloted, refined, and formally implemented and evaluated.

摘要/项目摘要： 癫痫是人类已知的最古老、常见的神经系统疾病之一， 约占全球疾病总负担的0.5%。大多数受影响的人 （>80%）生活在低资源环境中，如乌干达，穷人面临的风险最大。 他们高度暴露于与癫痫相关的其他共存疾病，以及 在获得适当护理方面的限制。在撒哈拉以南非洲，估计只有五分之一的PWE (SSA)能够使用抗癫痫药物进行适当的癫痫治疗。的 在获得适当护理方面的挑战与实际上普遍存在的歧视相结合 以及与癫痫相关的耻辱，导致了随后可预防的残疾的高水平， 社会排斥和癫痫患者的负面心理健康结果（PWE）。将近一 一半的PWE患有其他并存的疾病，使他们的生活质量恶化， 对心理、身体、社会和情感发展以及总体福祉的影响。 实现全民健康覆盖和可持续发展目标 如果不共同努力将癫痫列为国家公共卫生议程的优先事项， 通过持续和协调的行动。拟议国际公约的长期目标 协作努力是为了减少公共卫生负担和癫痫病污名的影响， 乌干达，以产生创新的，可转让的知识和护理收益。我们的前期工作 随机选择了一个国家社区队列，其中732人可能是PWE。 在我们最初的目标中，我们将利用横截面可比设计来临床表征这一点。 样本和匹配的对照，以告知我们的表现和影响的理解 在乌干达的一生中癫痫的发病率。表征将包括：ILAE癫痫分类 亚型、癫痫发作频率和严重程度以及疾病持续时间。环境（产伤， 营养不良）和遗传风险因素将进行探讨。合并症主要包括 精神和社会心理结果（抑郁、自杀、焦虑、生活质量（QOL），以及 感知的耻辱），但也将包括关键的健康合并症（烧伤，发育障碍， 和神经认知缺陷）。最后，学术进步和职业参与将是 确定。在第二个目标中，我们将使用混合方法来定义 高度脆弱的青少年癫痫（AWE）人群的耻辱，也暴露了 社区中污名化的主要驱动因素。将进一步澄清如何解释 社区对癫痫的误解与特定的患者特征相互作用， 影响，以增加风险或减轻耻辱，这反过来又影响生活质量的结果。 最后，采用科学和变革管理原则的创新组合， 让AWE的目标社区及其护理人员参与共同创建、试点、完善和测试 独特的减少污名化方案。通过与有关国家和 社区利益相关者我们将确定社区价值观，资源和网络。通过 分享信息和观点，提出减少耻辱感的方案， 与社区的优先事项和文化将产生。经过审查，选择最 有前途的资源使用，方案将进行试点，完善，并正式实施， 评估。