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A newly published study found that African American women living with Systemic Lupus Erythematosus (SLE) may better address and manage their disease when they have the support of an educational self-management program. More specifically known as a Chronic Disease Self-Management Program (CDSMP), this type of education is designed to increase people’s skills and confidence in managing their symptoms and treatment and help them communicate with their healthcare providers more effectively.
To determine if and how useful a CDSMP might be for African American women with lupus, the researchers started with a random sample of 150 people from this population. From there, they intentionally sampled 24 Black women to include a diverse set of participants representing the full spectrum of lupus manifestations and wide range of sociodemographic characteristics, like age and level of education.
After conducting one-on-one interviews with these women before and after their CDSMP training, they found the participants valued the program and felt it most notably improved their communication with doctors. Prior to the CDSMP workshops, 10 out of the 24 women reported being dissatisfied with their healthcare provider communication. After the education program, eight of those 10 women said they felt their communication with their providers had improved. Of those who were already satisfied with their healthcare provider communication, 62% felt their communication was further enhanced after the program.
Many participants also noted they were better able to manage their medication side effects afterward, saying they were better prepared to talk to their treatment team about reducing the dosage of problematic medications, exploring alternatives to those medications, or addressing the side effects more effectively.
“This work is part of an ongoing study funded by the National Institute on Minority Health and Health Disparities to examine the effectiveness of the CDSMP among African American women with SLE. As we know, African American women are a population vulnerable to high rates of SLE morbidity and mortality. As the CDSMP is a nationwide disseminated generic intervention, it can be accessible to socioeconomically disadvantaged people with SLE, and potentially facilitate reduction in use of healthcare service through improved self-management behaviors. Our findings suggest that African American women living with SLE perceived benefits from CDSMP participation on healthcare engagement. Should further quantitative results reach similar conclusions, providers should encourage African American women with SLE to participate in this widely available self-management program,” shared lead investigator on the study, Cristina Drenkard, MD, PhD.
This study focused on the benefits of CDSMP participation to African American women with lupus, because they are especially vulnerable to the disease, and the findings suggest the program may help improve the use of healthcare services within this population. However, it’s possible this type of education has the potential to enhance healthcare provider relationships, treatment management, and other issues for anyone living with the disease.
Learn more about Take Charge, a resource for managing lupus.
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