A widespread self-management education program to reduce health disparities in African American women with systemic lupus erythematosus

 描述(由申请人提供)：系统性红斑狼疮(SLE)是一种慢性疾病，主要发病于年轻的非裔美国女性。非洲裔美国人的患病率是白人女性的三倍，少数族裔患者患合并症、抑郁症、健康状况差和死亡率的风险最高。系统性红斑狼疮患者必须从事具有挑战性的自我管理活动，以促进他们的福祉和有效利用卫生保健服务。由于有效地自我管理慢性病需要经常与健康教育相关的技能，自我管理支持是美国卫生系统的首要任务之一。与关节炎和糖尿病等其他慢性疾病不同，没有广泛传播的、基于证据的系统性红斑狼疮特定自我管理资源。这项拟议的研究将检查为慢性病患者建立的自我管理计划-慢性病自我管理计划(CDSMP)是否可以改善基本的自我管理行为，并减少再生障碍性贫血女性SLE的负面医疗和心理社会后果。CDSMP是一个在社区广泛提供的以小组为基础的计划，作为改善自我管理行为和健康结果的有效工具，并减少慢性病患者的医疗保健利用率。CDSMP旨在解决跨越不同情况(如疼痛、疲劳、焦虑)的健康问题，凭借其广泛传播的优势，可能代表着患有SLE的非裔美国人的合适选择。由于CDSMP主要在患有较常见疾病(如骨关节炎、糖尿病)的白人中产阶级老年人的样本中进行评估，CDSMP在帮助AAS妇女自我管理SLE方面的有效性尚不清楚。这项研究旨在评估CDSMP在患有SLE的非裔美国女性中的有效性和文化相关性。参与者将从反对狼疮的格鲁吉亚组织(GOAL)招募，这是一个以人群为基础的系统性红斑狼疮患者队列，具有全面的临床和广泛的社会经济背景。随机抽样的150名非洲裔美国女性将在她们所在的社区参加CDSMP，以及患有其他疾病的人。将比较CDSMP参与者和接受常规护理的非裔美国女性SLE患者12个月和18个月的健康行为、健康状况和卫生服务利用的变化。将考察CDSMP对社会人口和健康因素对结果的不同影响。一项纵向定性研究将评估CDSMP对妇女在自我管理、保健和保健服务利用方面的定义和经验的影响。立即大规模实施CDSMP的潜力可能有助于缩小健康差距，因为很大一部分SLE人群处于不良结局的高危状态。

 DESCRIPTION (provided by applicant): Systemic lupus erythematosus (SLE) is a chronic disease that primarily strikes young African American women. Prevalence is three times higher for African American than White women, and patients from ethnic minorities are at the highest risk for comorbidities, depression, poor health, and mortality. SLE patients must engage in challenging self-management activities to promote their wellbeing and efficiently use health care services. Because effectively self-managing chronic conditions requires skills that are often related to health education, self-management support is one of the top priorities of the US health system. Unlike for other chronic illnesses such as arthritis and diabetes, there are no widely disseminated, evidence-based SLE-specific self-management resources. The proposed study will examine whether an established self-management program for people with chronic illnesses, the Chronic Disease Self-management Program (CDSMP), can improve fundamental self- management behaviors and reduce the negative medical and psychosocial consequences of SLE among AA women. The CDSMP is a broadly available small group-based program delivered in the community as an effective tool for improving self-management behaviors and health outcomes, and for decreasing health care utilization in people with chronic diseases. Designed to address health issues that cut across different conditions (e.g., pain, fatigue, anxiety), the CDSMP may represent a suitable option for African American with SLE, with the advantage of its wide dissemination. As the CDSMP has been primarily evaluated in samples predominantly represented by white middle class seniors with more common diseases (e.g. osteoarthritis, diabetes), the effectiveness of the CDSMP in helping AAs women to self-manage SLE is unknown. This study aims to assess the effectiveness and cultural relevance of the CDSMP in African American women with SLE. Participants will be recruited from the Georgians Organized Against Lupus (GOAL), a population-based cohort of individuals with SLE with the full clinical spectrum and from broad socioeconomic background. A random sample of 150 African American women will attend the CDSMP in their communities, along with people with other diseases. Twelve- and 18-month changes of health behaviors, health status, and health services utilization will be compared between CDSMP participants and African American women with SLE receiving usual care. Differential effects of the CDSMP on outcomes by sociodemographic and health factors will be examined. A longitudinal qualitative study will assess the impact of the CDSMP on women's definitions and experiences related to self-management, health and health service utilization. The potential for immediate large-scale implementation of the CDSMP to a large segment of the SLE population that is at high-risk for poor outcomes may contribute to reduce health disparities.