Expert Q&A: How a lupus self-management program is turning lives around

May 13, 2019

African American women are disproportionately likely to develop systemic lupus erythematosus, and their disease course is more severe than other demographic groups, says Dr. Edith Williams. In this Q&A, she introduces us to a peer-mentoring program designed to foster self-management.

African American women are disproportionately likely to develop systemic lupus erythematosus, and their disease course is more severe than other demographic groups, said Edith Williams, Ph.D., of Medical University of South Carolina. At LUPUS 2019 last month in San Francisco, Dr. Williams introduced a peer-mentoring program designed to foster self-management.

Q:  Why are African American women disproportionately affected by systemic lupus erythematosus (SLE)?

I share in the consensus with the rheumatology community that genetic contributions, as well as environmental factors, play a part. It is highly likely that African Americans share some genetic predisposition not just to lupus, but also to other autoimmune conditions. As a group, they are also disproportionately exposed to a number of environmental health threats that catapult that predisposition into the development of disease more often than other groups who may not be exposed to the same threats.

African Americans have been observed to have higher levels of chronic stress, due to continual exposure to health threats. Staying in a state of heightened stress response wears down organ systems and regular body processes, often described as “weathering,” whereby organs and other bodily processes seem to age or degenerate at a faster than normal rate. Patterns of illness and degradation of organ systems in African Americans seem to mimic those of aged populations, even in younger members of that group. For example, you’ll see young men with lupus who are in renal failure and have morbidities more like those of 60- or 70-year-olds when they are only in their 20s or 30s.
 
Q:  Do you have a sense of the actual prevalence rates compared to other ethnicities?

Generally, in the literature, there is a three to five times higher burden of disease in African Americans compared to Caucasian populations, not just in the prevalence of the disease itself, but also in more severe disease flares, a higher rate of serious complications, increased hospital readmissions, with similar patterns in mortality.

Q:  Why is self-management of lupus an issue?

The issue with self-management largely boils down to a lack of trust in their providers and in the medical system in general. A lot of the African American women we encounter are very wary not only of what’s being prescribed to them, but also the recommendations that they are receiving from their doctors and the medical institutions, and this can lead to noncompliance with appointments and non-adherence with medications.

Q:  I understand that you are involved in a program designed to encourage self-management?

In self-management, there’s a lot more involved than just women taking care of themselves. Through the PALS program (Peer Approaches to Lupus Self-Management) of the Lupus Research Alliance, we’re trying to instill lessons so that patients know how to recognize a flare, when it’s important to speak with a doctor or go to the hospital and when it’s something they can manage on their own through nutrition, rest, relaxation.

Q:  Can you provide an example of how it benefits patients?

I know of one woman who started in the pilot study two years ago. She was older and kept trying to handle her disease on her own. She loved having a mentor to talk to in the program and realized that she had been pushing herself much harder than she should have been and that it was very detrimental to her health.

She had been trying to manage two full-time jobs, children, and community obligations, and with her mentor’s support she learned to slow down and take on less. Because of that, she regained a lot of lost functionality, and today, she says she’s in the best health that she’s been in for a long time.

Q:  What’s next?

We’re in the first of three waves in a five-year study with about 80 mentees and 20 mentors. We’re looking at sustainability of the program and long-term health improvements over time. Outside of that, we’d like to offer this type of program to younger women.

 

For more information on PALS, visit, the Lupus Research Alliance.

REFERENCE:

Williams E. (2019). “Cost effectiveness of a peer mentoring intervention to improve disease self-management practices and self-efficacy among African American women with Systemic Lupus Erythematosus.” LUPUS 2019, April 2019, San Francisco.