Peers Helping Peers to Manage Their Lupus



As a rheumatologist who manages patients with lupus, Jim Oates, MD, understands that some of what patients hear about lupus from their doctors doesn’t always translate into a better understanding of the disease or into changes in their behaviors to better control their lupus.

“Not many doctors who treat lupus patients have had lupus, so they can lack some credibility in the eyes of the patient,” said Dr. Oates, director of rheumatology at the Medical University of South Carolina (MUSC) in Charleston.

For adult African American women, this problem can be even more acute because the incidence of lupus among this population is about three times greater than in adult women overall and about eight times greater than in the population as a whole (Arch Intern Med.1974;134:1027-35). So Dr. Oates’ colleague in the department of public health at MUSC, associate professor Edith Williams, PhD, is developing interventions that aim to break down those barriers of credibility.


Dr. Jim Oates

Dr. Edith Williams
“This really falls under the umbrella of health disparities research,” Dr. Williams said in an interview. “African American women particularly are disproportionately burdened with lupus from its development to the severity of the disease and mortality.”

She noted “there have not been many” previous interventions targeting those disparities among African American women with lupus. “In looking at what has already been done, I tried to build upon evidence-based programming but also use a culturally tailored approach that would be a little more relevant to this unique population,” she said.

One intervention, supported with $2 million from the National Institutes of Health, is enrolling and training African American women with lupus to be peer mentors to others with the disease to help guide their lifestyle and treatment decisions to keep their disease under control. Another intervention is reaching out to college-age women at historically black colleges and universities to increase their awareness of lupus preemptively.

The peer mentoring program, known as PALS, for peer approaches to lupus self-management, is about halfway through a 5-year clinical trial (Trials. 2019. doi: 10.1186/s13063-019-3580-84; Identifier: NCT03734055).


In a feasibility pilot study that Dr. Williams led, the peer-to-peer approach showed that those receiving the mentoring – the mentees – trended toward lower disease activity (P = .004) and improved health-related quality of life (QOL), in the form of decreased anxiety (P = .018) and decreased depression (P = .057) (Arthritis Care Res. 2018 Jun;70[6]:908-17). The pilot study found other improvements in health-related QOL measures, but they didn’t reach statistical significance.

The clinical trial, Dr. Williams explained, is recruiting and training up to 60 mentors along with 300 mentees in three different waves over 5 years. The mentees will be split into two groups: those who meet with a mentor for an hour every other week, usually via telephone or virtually and those who meet in an hour-long support group every other week, who are considered controls. The support group typically consists of four or five women on a phone or video conference.

Dr. Williams and her research team gather disease activity and QOL data at baseline, at 3 months, and at 12 months after intervention after a booster session.

She acknowledged the early and interim results so far are anecdotal. “A lot of the ladies tell us how much they appreciate the program in their lives, just having someone who can talk them through a lot of the daily challenges that they go through and have to make decisions about,” Dr. Williams said. “They just really appreciate that human connection this program is allowing them to have that they didn’t have before.”

The first wave has completed its cycle and the second wave is two-thirds complete, Dr. Williams noted.

“The wave 1 analysis has shown a lot of similarities between our control and intervention groups, and I believe that’s a function of exactly what our anecdotal evidence is showing: That the support this program engenders is over-powering,” she said. “Even the ladies participating in the support group are feeling the same kind of support and encouragement and ability to reach out and talk through a lot of these experiences in the same way the ladies in the mentored group are.”

Between the first and the second wave, the trial design has undergone some tweaks: In wave 1, all participants were given a smartphone, but that’s now an option because some participants choose to use their own cell phones; and an administrative assistant has been hired to follow up with study participants. Study participants have been “pretty good” about compliance, Dr. Williams noted, “but you will have those you need to stay on top of.”

From a rheumatologist’s perspective, Dr. Oates noted that the peer mentoring is an important element in the participating patients’ overall care. “In a nutshell, it’s giving them the tools to manage their disease,” he said.

The strictures of health insurance limit physician-to-patient interactions to focus on disease activity and medication issues – refills, side effects, tolerance and compliance. “We’re often dealing with individuals who are in social situations that are challenging even for people without lupus,” he said. “This is a disease that affects young women who are often caring for both children and parents, all while juggling one or more jobs. Now they’re beset with management of this significant systemic illness.



“It’s a lot to ask of any individual, but when you put them in a social situation where life is much more difficult, to them it’s just too much. We don’t have the resources to educate them about how to manage this disease successfully on their own.”

Medication adherence is frequently an issue, he said. “The times when we find our hearts broken the most are when we prescribe a medication that we know is effective, and for a variety of reasons, the patient does not take it,” Dr. Oates said. “The communication breaks down, and 6 months later we see them in the hospital with renal failure.”

Peer mentoring can help these patients communicate more effectively with their providers and help them to better understand how medications might affect them. “It increases their trust, it reduces their anxiety, and one of the takeaways from the pilot study was that it trended to reducing disease activity,” he said. “Having the education peer delivered and having a listening ear is invaluable.”

The clinical trial is scheduled to be completed in September 2023.


Another intervention focuses on college-age African American women and is supported by a 2-year $550,501 grant from the National Institute of Arthritis and Musculoskeletal and Skin Diseases, part of the NIH. It has three primary components: beginning an educational outreach on college campuses; a pilot with a patient navigator for lupus patients at MUSC Health; and a partnership with the University of Alabama at Birmingham to grow awareness of minority health and health disparities among providers at both institutions.

Dr. Williams said the outreach work is in its beginning stages. She will work with focus groups of women ages 18 to 23 at Claflin University and South Carolina State University in Orangeburg, and Voorhees College in Denmark, S.C. “The goal is to develop a whole toolbox of educational materials that we can roll out with subsequent funding,” she said.

The overarching objective is “drafting these people very early in the game,” Dr. Williams noted. “That’s why our work with college-age students is so important, so they’re informed as early as possible in diagnosis.”

She is also developing interventions targeting even younger women and African American men, who are also a vulnerable population.

“This has been very eye opening as far as letting us know where people are when they reached us and then what we can do to make sure they’re better equipped and informed before they get to those later, more complex stages of disease,” Dr. Williams said.