Black Women with SLE Find Self-Management Program Improves Health

Marisa Wexler, MS avatar

by Marisa Wexler, MS |

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African-Americans and lupus

An educational program done in small, local, and peer-led groups, called the Chronic Disease Self‐Management Program, was seen as helpful by African-American women with systemic lupus erythematosus (SLE), improving their diet, ability to exercise, and their adherence to treatment, a study suggests.

The study, “Exploring the Perceived Impact of the Chronic Disease Self‐Management Program on Self‐Management Behaviors among African American Women with Lupus: A Qualitative Study,” was published in the journal ACR Open Rheumatology.

SLE disproportionately affects African-Americans, who are also at greater risk  of more severe disease than are Caucasians. African-Americans are also know to face greater hurdles in accessing healthcare in the U.S., including to programs that might help them better manage their disease.

Self-management activities for SLE focus on disease control, and can range from taking medications as directed to understanding the importance of a proper diet and exercise, and how to best adhere to them.

CDSMP is an educational intervention, run in communities, designed to sharpen the skills needed to manage health in people with chronic conditions like lupus. It consists of six weekly classes, each lasting 2.5 hours, led by two trained peers.

“The CDSMP addresses self‐management challenges that are universal across chronic conditions, including pain and fatigue, healthy eating, physical activity, and effective communication with health care professionals,” the scientists wrote.

This program’s potential to improve SLE-related disease outcomes among African-American women is being examined in a clinical trial (NCT02988661), called Women Empowered to Live with Lupus (WELL).

This study, expected to end in August 2021, is enrolling up to 400 eligible women for six weeks of CDSMP classes at its single Emory University, Georgia, site.

Researchers here conducted two rounds of interviews with 24 African-Americans (mean age 48.6, disease duration of about 14 years) who took part in WELL. One interview was done in the month before the CDSMP intervention, and the other two to six weeks after the program had ended. Twenty-three took part in both interviews.

Ten women attended at least five sessions, and seven attended one. Six of the seven single-session participants were younger than 50.

Participants were selected to include a spectrum of ages, education levels, disease activities, and mental health status. Most were employed (91.7%), and had graduated a university (50%) or high school (41.7%). Nearly half had a low annual income of  less than $20,000, and 45.8% either had no health insurance or were under-insured.

Trends in self-management activities were reported before and after the CDSMP series, highlighting areas where it had an effect.

Twelve women reported either starting to exercise more regularly, or increasing the frequency with which they exercised after the intervention. One woman, who did not exercise regularly before it, reported that exercise “helps me sleep at night … It strengthens me, it helps my appetite.”

Fourteen women reported greater efforts to relax – whether something structured like meditation, or just ‘taking it easy’ – after completing CDSMP. For some, this helped in managing SLE-associated pain without the use of medications.

“[B]efore the workshop I would just pop [pain] pills and self medicate, honestly,” one said. “[N]ow I grab some music, put on some music, and lay there and just breathe … I can’t tell you the last time I took a pain pill … I just breathe my way through it honestly now.”

Of 20 participants who were asked, 10 said the workshop helped to improve their compliance with prescription medicines.

Seven out of 17 women reported that the intervention led to improvements in their diet.

“[N]ow I eat more fruit versus the candy I used to always eat ’cause that was one of my goals,” she said. “And I stuck with that so now I’m buying like bowls of fruit instead of bags of candy.”

Overall, “African American women living with SLE perceived the CDSMP as a valuable resource to adopt or improve fundamental self‐management behaviors, including relaxation, exercise, medication adherence, and healthy eating,” the investigators wrote.

Because the CDSMP is widely available to adults in the United States through community centers, they suggested this intervention would be accessible to African American women with SLE, and help in their learning ways to better manage their health.