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.
Systemic lupus erythematosus (SLE) is a complex chronic disease that predominantly strikes young African American women. People living with lupus must engage in challenging self-care tasks to promote their wellbeing. Although self-management support is crucial to help patients to take control of their disease, no SLE-specific self-management program is widely available. The Chronic Disease Self-Management Program (CDSMP) is a nationwide accessible community-based self-management education program that contributes to improved health in people with a variety of chronic conditions. This study will examine the benefits of the CDSMP to improve outcomes and reduce health care utilization in African American women with lupus. The potential for immediate wide-scale delivery of the CDSMP reaching African American women with SLE may contribute to reducing health disparities by lessening the individual and societal burden caused by this disease.
