Age, Work Status Affect Self-management Workshop Participation in Black Women With SLE

The report suggests childcare concerns could be a significant factor keeping Black women from attending weekly workshops.

A new report finds younger Black women with systemic lupus erythematosus (SLE) are less likely than their older peers to complete self-management programs.

The study is believed to be the first to look closely at factors affecting SLE self-management among Black women, a demographic group that is disproportionately affected by SLE. The study was published in Arthritis Care & Research.

Corresponding author Titilola Falasinnu, PhD, of the Stanford University School of Medicine, and colleagues said racial minorities with SLE have higher risks of disability, reduced quality of life, and mortality, compared with White patients. Yet, Blacks have traditionally been underrepresented in studies of patients with SLE, and Black women tend to be less likely to participate in behavioral intervention programs.

In order to better understand why, Falasinnu and colleagues decided to ask a cohort of Black women with SLE to attend Chronic Disease Self-Management Program (CDSMP) workshops, and then track their participation and completion. CDSMP programs are designed to promote patient wellbeing and empower patients to manage their diseases in an effective way. The sessions are conducted in small groups, and usually consist of 4-6 weekly sessions of approximately 2.5 hours each. Falasinnu and colleagues said data show patients who participate in such programs have better health outcomes and are less likely to go to the emergency department.

Falasinnu and colleagues focused their study on Black women from the Georgians Organized Against Lupus (GOAL) cohort, a population-based group of women with SLE who were included in that state’s lupus registry.

After receiving an invitation, a total of 228 women from the cohort agreed to participate in the workshops, though 25 never registered for a workshop and 35 signed up but did not attend any workshops.

Of the 168 who attended at least one of the two workshops (deemed “initiators”), 126 attended at least 4 of the classes, and were considered completers of the program. Patients received weekly phone calls to assess attendance, and were either compensated for their travel or provided with round-trip transportation.

Next, the investigators tried to figure out what made patients more or less likely to participate in a workshop. They found that some factors, such as disease duration and marital status, did not affect the likelihood that a patient attended a workshop. Initiators were, however, more likely to be college-educated, have no children, report severe organ damage, and have insurance. However, many of those differences between initiators and non-initiators were small, the authors said.

The only 2 factors that were statistically significant in the final analysis were age and employment status. Older patients were more likely to be initiators (aOR, 1.03; 95% CI, 1.00-1.06) and patients who were disabled or unemployed were more than twice as likely to participate in a workshop compared to those who were not (aOR, 2.05; 95% CI, 1.05-4.14). In terms of completing the program, the single factor that was associated with completion was age; with each additional year of age, the likelihood that a patient completed the program went up by 4%.

Falasinnu and colleagues said their study had a high overall completion rate compared to other studies. They said their finding that people who are unemployed or disabled were more likely to participate could be an indication that participation is linked with the degree to which a person’s life has been disrupted by the disease.

In terms of age, the authors said the results suggest that childcare is a major limiting factor in participation.

“Life with children can be busy and the schedules of parents may not permit the addition of a weekly commitment,” they said. “Future interventions can improve participation among those with children by making provision for childcare either onsite or through remuneration for childminding services.”

The investigators concluded that physicians and healthcare organizations should be more attentive to the needs of younger patients, and consider how workshops like CDSMP can be made flexible, including using internet-based formats, to better meet the needs of these patients.


Falasinnu T, Bao G, Brady TJ, Lim SS, Drenkard C. Factors associated with the initiation and retention of patients with lupus in the chronic disease self-management program. Arthritis Care Res (Hoboken). Published online November 4, 2021. doi: 10.1002/acr.24811. doi:10.1002/acr.24811