Approximately 200,000 people may be living with systemic lupus erythematosus (SLE) in the United States (1–6). Racial minorities with SLE often face multiple challenges including higher risk for disability, reduced quality of life, and mortality compared to Whites (7–9). Given the complexity of health problems associated with SLE, education is critical to promoting positive self-management practices(10–12). Proper medical care and patient engagement in self-management play a major role in SLE outcomes(13–15). Yet, Black patients face formidable barriers to accessing healthcare and self-management education(13, 16–21). Moreover, Black individuals are historically underrepresented in SLE studies and engaging them in behavioral interventions is challenging. Underrepresentation of Black women with SLE in behavioral interventions limits opportunities for effective health education aimed at improving self-management (22).

The Chronic Disease Self-Management Program (CDSMP) is an evidence-based self-management education intervention designed to enhance self-efficacy and skills to manage health problems, promote wellbeing, and enable the efficient use of healthcare services in people with chronic illness (10–12). Conducted among small groups (10–16 participants) in the community by two certified peers, the CDSMP consists of six consecutive weekly classes, each lasting 2.5 hours (23). Completion of 4 to 6 CDSMP classes is associated with significant improvements in health outcomes and reduction in emergency department visits (24–26). Initially implemented in whites and older participants, the CDSMP has been increasingly shown to improve self-management skills in racial minorities) (27). Since 2003, the US Administration on Aging (AoA) has promoted the development of infrastructure to deliver the program across multiple states(14) and the Evidence-based Leadership Council program locator indicates that there is at least one, and usually multiple sites offering the CDSMP in every US state (28).

There is compelling evidence for the use of the CDSMP among patients with SLE due to its proven success in the management of other chronic conditions (24). Recent findings suggest that the program is perceived as an effective self‐management intervention by Black women with SLE and can potentially catalyze improvements in self‐management behaviors in this population (15, 29, 30). Although not SLE-specific, the CDSMP core curriculum addresses many of the self-care challenges faced by women with SLE. Moreover, because its widespread availability, the CDSMP can be leveraged as an accessible option for targeting Black women with SLE in the community. Our National Institute of Minority Health and Health Disparities (NIMHD) funded project, Women Empowered to Live with Lupus (WELL) Study, is a trial conducted to fill a need for an accessible self-management intervention that can potentially improve outcomes in this population (25).

Because the CDSMP consists of six weekly classes of 2.5 hours each and entails both the interaction with a small group of peers and the implementation of weekly action plans, individual factors may influence participants’ commitment to the program. However, studies about CDSMP engagement of Black individuals are scarce. Qualitative data gathered during the recruitment of Black women with SLE in the WELL Study suggested that this population faces multiple CDSMP participation barriers, including unpredictable personal and health-related issues, misunderstanding of the scope and benefits of the intervention, and transportation problems (25). However, individual aspects specifically associated with both engagement and completion of the CDSMP program among Black women with SLE have not been studied yet. Understanding those factors is essential to facilitate the participation of minorities with SLE in self-management programs. Higher rates of commitment may spur the adoption of treatment improvements and behavioral interventions at a faster rate and appropriate advancement in SLE. Thus, the characterization of factors that limit the engagement of patients in self-management interventions are crucial to inform healthcare providers and policymakers about initiatives needed to mitigate such barriers and promote the implementation of the CDSMP in this population. For these reasons, the aim of this study is to examine factors associated with Black women with SLE’s initiation and completion of the CDSMP.

We consented 228 GOAL participants who expressed interest in the CDSMP. Figure 1 depicts that 25 of those were unable to register to any of the available CDSMP workshops. Of 203 CDSMP registered participants, 168 attended at least one of the first two weekly classes and were classified as Initiators (blue box). Of the 168 Initiators, 126 that completed at least 4 of the 6 weekly classes were classified as Completers (green box), and the remaining 42 were Non-completers (yellow box). Sixty participants were classified as Non-initiators (pink box), including those unable to register (n=25) and those unable to attend either the first or the second CDSMP class (n=35).

This study explores factors associated with the initiation and completion of the CDSMP among Black women with SLE. Nearly 74% WELL consented women participated in the CDSMP, of whom 75% graduated (i.e., completed ≥4 of 6 workshop classes). While older women and those who were unemployed/disabled were more likely to initiate the CDSMP classes, only older age increased the likelihood of being a CDSMP completer.

The overall enrollment and completion rates in this sample are relatively high considering that SLE is a complex condition with high prevalence of comorbid conditions and symptoms that wax and wane. Other CDSMP have reported lower rates of initiation and completion (21). A systematic review of strategies for recruiting populations to participate in CDSMP reported that recruitment varied between 7% to 100% of people approached, with the average being 53% (21). The review also noted barriers to participation included transportation and issues with time obligation and/or scheduling conflicts (21). They also found that cultural barriers to recruitment were mentioned in a few studies among non-white populations in China and Bangladesh (21). A study examining differences in the completion rates of members of racial and ethnic minority groups using data from CDSMP sites in 47 sites in the United States reported that the overall completion rate was 75%, with 79% completion rate among Blacks (27). Gitlin et al examined CDSMP uptake among older Black participants attending a senior center in Philadelphia; 91% of those approached enrolled and 85% completed the program (41). Also, the feasibility of the CDSMP was evaluated in a group of 22 young adults with sickle cell disease, however, only 64% completed the program.

In the current study, the most significant factor associated with initiating and completing the CDSMP was older age. While Korda et al did not find much difference by age in completion rates: 75% of <60 years and 77% of ≥60 years (27), little is known about CDSMP initiation and completion in populations less than 65 years. In a study of CDSMP participation in lower-to-middle wage workers, Kniepp et al found results that mirrored ours; both initiation and completion increased with age (42). These findings highlight the need to make accommodations and conveniences to improve participation in the younger population, including web-based sessions which have been found to be efficacious (43). Alternative community-based strategies that might work for this population include CDSMP delivered by organizations that target younger minorities with SLE and video conference for participants who attended the first class but face challenges to attend other classes. We found that initiation is subpar among women with children. This finding aligns with those of Lin et al who noted that while participants were intrinsically motivated to participate, external factors such as increased life chaos was associated with lower attendance (44). Life with children can be busy and the schedules of parents may not permit the addition of a weekly commitment (44). Future interventions can improve participation among those with children by making provision for childcare either onsite or through renumeration for childminding services.

The finding that people with high organ damage and those who are unemployed/disabled were more likely to initiate the CDSMP is not surprising because these individuals may be more motivated to participate due to having more comorbidities or severe disability from SLE. Interestingly, the odds of being an initiator remained significantly higher in participants who self-reported unemployment or disability, but not in those with higher organ damage. These findings suggest that absence of employment may also make it easier for participants to attend the CDSMP workshops during a business day. This also reflects the need to focus resources on accommodating SLE individuals in the workforce, such increasing the availability of evening and weekend classes.

Older age was the only factor significantly associated with completing the CDSMP. These findings suggest that younger participants may have lost motivation and interest throughout the weeks, or that the program’s benefit was not worth the effort, given the presence of potentially more competitive life demands in this group. However, results of our qualitative sub-study do not support a less favorable perception of the value of CDSMP by age (29). We found marginal evidence that workshop sessions that included only patients with SLE was associated with higher completion rates, however, the study was not designed to address that issue and the sample size was small. Interestingly, WELL women who also participated in a qualitative substudy did not raise organic concerns about the diverse composition of the CDSMP groups (15, 29).

This study has limitations. First, we chose to conduct this study secondary to the aims of the WELL study in order to inform future (larger) studies. That said, this analysis is meant to be hypothesis generating rather than hypothesis proving as it includes a convenience sample. Second, to reduce participants’ barriers to workshops attendance, the WELL protocol implemented procedures (e.g., class reminders, transportation support) that represent deviations from the real-world CDSMP. Third, to achieve the desired sample size, some of the workshops were attended exclusively by study participants. Fourth, findings of this study are best generalized to Black women in the Southeastern USA and not to other racial/ethnic groups and in other regions or countries. Fifth, the research coordinator may have enhanced participation in the study; real-world CDSMP implementation might not have this additional resource. However, providers and organizations that advocate for patients with SLE can play a key role by referring patients and supporting to the most vulnerable groups.

This study has several strengths. The design enabled recruiting a large number of Black women with SLE, a historically under-represented population in clinical and behavioral research (45). Moreover, this is the first study of initiation and completion of the CDSMP in young black women with a relatively rare and complex condition as SLE. These demographic and disease-related findings complement those from a previous report focused on the CDSMP participation barriers faced by these women. Findings from this study can inform methods to understand barriers and facilitators of engagement among young people, especially Black women with SLE in the CDSMP and other group-based structured education interventions.

In conclusion, our study sheds light on participation of black women with SLE in the CDSMP and other group-based interventions. Consistent with studies among minority populations with other chronic conditions, our findings highlight that younger women might face external barriers or could less motivated to attend and complete weekly, structured, in-person sessions. A better understanding of the needs of younger participants, and the implementation of web-based interventions, childcare support, and workshop schedule flexibility are strategies that may help to improve attendance in this population.