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: 10296692
• 负责人: Angelina Mwesige Kakooza
• 金额: $ 53.26万
• 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/10296692
• 关键词: Achievement; Address; Adolescent; Adult; Affect; Africa South of the Sahara; Anxiety; Attitude; Behavior; Birth trauma; Brain; Brain Diseases; Burn injury; Caregivers; Caring; Characteristics; Child; Classification; Clinic; Clinical; Communities; Corrosives; Coupled; Depression and Suicide; Development; Discrimination; Emotional; Epilepsy; Exposure to; Foundations; Frequencies; Goals; Health; Health Policy; Individual; Infrastructure; International; Intervention; Knowledge; Longevity; Malnutrition; Medical; Mental Health; Methods; Neurocognitive Deficit; Occupational; Occupational Status; Outcome; Output; Participant; Patients; Perception; Personal Satisfaction; Pharmaceutical Preparations; Population; Prevention strategy; Psyche structure; Public Health; Quality of life; Reporting; Research; Resources; Rest; Risk; Risk Factors; Sampling; Seizures; Severities; Severity of illness; Stigmatization; Subgroup; Sustainable Development; Testing; Translating; Uganda; Universities; Work; World Health Organization; base; 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; psychosocial; response; social; social exclusion; social stigma; 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 全球疾病总负担约为0.5％。大多数受影响的人 （> 80％）生活在低资源设置中，例如在乌干达发现，较差的风险最大 他们高暴露于与癫痫有关的其他共存状况以及 获得适当护理的局限性。在撒哈拉以南非洲，估计只有1分的5 PWE （SSA）能够使用抗塞氏菌药物对癫痫的适当治疗。这 挑战在获得适当的护理方面的结合，实际上是普遍的歧视 与癫痫相关的污名导致随后可预防的残疾水平， 癫痫患者（PWE）的社会排斥和负面的心理健康结果。几乎一个 PWE的一半负担负担其他共存的医疗状况，使他们的生活质量恶化， 对心理，身体，社会和情感发展以及一般福祉的影响。 因此，实现普遍健康覆盖范围和可持续发展目标 如果没有一致努力在国家公共卫生议程中优先考虑癫痫 通过持续和协调的行动。拟议国际的长期目标 协作努力是减轻公共卫生负担和癫痫污名的影响 乌干达可以产生创新的，可转移的知识和护理收益。我们的初步工作 已经参与了一个随机选择的国家社区队列，其中732个可能是PWE。 在我们的最初目标中，我们将利用横截面可比设计在临床上表征这一点 样品和匹配的控件，以告知我们对 乌干达整个生命周期的癫痫。特征将包括：ILAE分类癫痫 亚型，癫痫发作的频率和严重程度以及疾病持续时间。环境（出生伤害， 营养不良）和遗传危险因素将被探讨。合并症将主要包括 心理和社会心理结局（抑郁，自杀，焦虑，生活质量（QOL）和 感知到的污名），但还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，使用混合方法方法，我们将定义 对高度脆弱的青少年癫痫（敬畏）人口的污名，也暴露了 社区污名的主要驱动力。将进一步澄清以解释如何 社区对癫痫的误解与特定的患者特征相互作用和 影响增加或减轻污名的风险，从而影响QoL结果。 最后，采用科学和变更管理原则的创新融合，我们将 让一个有针对性的敬畏社区及其照顾者共同创建，飞行员，完善和测试 独特的污名节目。通过与相关国家的各种会议 社区利益相关者我们将确定社区价值观，资源和网络。通过 共享信息和观点，拟议的减少污名计划，引起共鸣 将产生社区的优先事项和文化。审核最多选择 有希望使用资源，计划将被试用，完善和正式实施，并 评估。