Abstract
Introduction:
Systemic Lupus Erythematosus (SLE) disproportionately affects African American women, who experience higher disease severity and face barriers to accessing supportive care. Peer mentoring offers a culturally tailored approach to improving chronic disease self-management and psychosocial well-being in underserved populations.
Aims:
To assess the impact of a peer-mentoring interventions on self-reported disease activity, symptom severity, and flare frequency among African American women with SLE.
Methods:
This study is a sub-analysis of the Peer Approaches to Lupus Self-Management (PALS) randomized controlled trial. Adult African American female participants with SLE were assigned to an intervention, a social support control group, or served as peer mentors. The intervention group received twelve structured biweekly sessions over 24 weeks, delivered by trained peers using a culturally relevant curriculum. Outcomes were measured at baseline, 3, 6, and 12 months after the intervention using the Systemic Lupus Activity Questionnaire (SLAQ). Linear and cumulative logit mixed models were used to assess longitudinal changes, adjusting for sociodemographic covariates.
Results:
The intervention group reported sustained reductions in symptom severity over time, although not statistically significant. Notably, mentors demonstrated significant improvements in symptom severity at 3 months (mean difference: −2.53; 95% CI: −4.95, −0.11), suggesting reciprocal benefits of peer engagement. Employment and insurance status were consistently associated with lower symptom burden and disease activity.
Conclusion:
The results of our study support policy initiatives that invest in peer-based self-management interventions, expand insurance access, and address employment barriers shown to influence disease burden in individuals with SLE. Such efforts are critical to reducing health disparities and improving long-term disease outcomes.
Keywords: Systemic Lupus Erythematosus, African American women, mentorship, disease activity, self-management
1 |. Introduction
Systemic Lupus Erythematosus (SLE) is a chronic multisystem autoimmune disease characterized by the autoantibody production leading to widespread inflammation and tissue damage1, 2. It affects various organ systems and presents with symptoms such as fatigue, rash, joint pain, and depression,2 which vary based on the organs involved and the patient’s sex and ethnicity3, 4. In addition to having increased rates of anxiety and depression, patients with SLE experience severe stress from the illness and its repercussions. Behavioral treatment, support groups, and occasionally psychiatric involvement are reported to be helpful5.
Epidemiological studies show that SLE disproportionately affects females, particularly those in their third to fourth decades of life, as well as individuals from racial and ethnic minorities3, 6. African-American (AA) and African Caribbean women face a significantly elevated risk of developing SLE compared to their European American counterparts4 3. Findings from the LUMINA cohort identify African American ethnicity, lack of health insurance, and limited social support as key predictors of heightened disease activity7. Therefore, Social Determinants of Health (SDOH), including employment, insurance status, and health literacy, directly impact disease activity and access to care in individuals with lupus8.
Given these disparities, there is growing interest in non-pharmacological strategies to enhance disease management, particularly among underserved populations. Socio-behavioral interventions, including peer support and self-management programs, have shown promise in improving disease-related outcomes by enhancing patient empowerment, promoting adherence, and addressing psychosocial needs9. Studies have linked limited social support to decreased health-related quality of life in SLE patients10. In this context, self-management strategies represent an effective means of addressing health inequities. The “Women Empowered to Live with Lupus” (WELL) study demonstrated the efficacy of the Chronic Disease Self-Management Program (CDSMP) among African American women with SLE11
Peer mentoring, successful in managing other chronic illnesses prevalent in minority communities, like diabetic foot care12, 13 and HIV14 and is now being explored for SLE. The Peer Approaches to Lupus Self-Management study (PALS) by Williams et al., examined whether peer monitoring can improve disease self-management behaviors, reduce activity, and enhance quality of life in African American women diagnosed with SLE15. The present analysis assesses changes in disease activity across control, mentee, and mentor groups over 12 months, adjusting for demographic covariates.
2 |. Method
Study Designs and Participants
The Peer Approaches to Self-Management (PALS) (Williams et al, 2019)15 randomized controlled trial designed to evaluate a culturally tailored, manualized peer mentoring intervention on disease activity and self-management among African American women with SLE in the Southeastern United States. AA women with active SLE were enrolled as peer mentors (women with longer disease duration and demonstrated competence in managing their condition) or as mentees who were randomized to receive either peer mentoring or a social support control intervention.
Participants were recruited through the SLE database at the Medical University of South Carolina (MUSC), located in Charleston, SC, among women who had agreed to be approached by research studies for recruitment.
Mentees: Eligible mentees were 18 years of age or older, female sex, African American race, and had a clinical diagnosis of SLE from a physician based on the revised American College of Rheumatology (ACR) criteria for SLE16. They had to be enrolled in the MUSC P30 Core Center for Clinical Research (CCCR) database or receive care for SLE at an MUSC clinic (if not enrolled in the database) to be eligible for study participation. Recruitment occurred by sending direct mailings to the women, posting flyers in MUSC SLE clinics, or distributing flyers to other stakeholders.
Mentors: Like the mentees, mentors were 18 years of age or older, female sex, African American race, and had a clinical diagnosis of SLE from a physician based on the revised ACR criteria for SLE16. In addition, mentors were required to have lived with SLE for at least two years, attend scheduled training sessions with the Principal Investigator (PI), and provide 1:1 support to up to three mentees. Those who have participated in prior research are eligible to participate in this study as mentors. Eligible mentors received recruitment letters that explained the study and provided contact information for reaching out if they were interested in participating in the study as a mentor. Subsequently, they were invited to participate in the study if they demonstrated competency in SLE self-management by MUSC Rheumatologists, were deemed psychologically competent based on a mentor screening interview, and validated psychological scales (Williams et al., 201915), and were trained by the PI on study procedures.
Final determination of competency, emotional stability, verbal communication skills, and maturity to serve as a mentor on the study was made by the PI. Mentors and mentees were paired based on shared concerns and experiences.
Intervention
This peer mentoring intervention is being performed in 3 waves. In each wave, trained mentors were assigned up to three mentees, and the pairs engaged in biweekly, 60-minute mentoring sessions over a 24-week period. Sessions were conducted remotely via telephone or video conferencing using WebEx.
The intervention included a total of 12 structured sessions, each guided by a specific educational topic adapted from established chronic illness self-management curricula, including the Chronic Disease Self-Management Program (CDMP), the Arthritis Self-Management Program (ASMP), and the SLE Self-Help (SLESH) Course with added culturally relevant modules addressing trust, communication, and coping15, 17, 18. Each session followed a three-part format: (1) an introduction, (2) structured education, and (3) problem solving. Mentor-mentee discussions incorporated both educational content and personal experiences with SLE self-management, with a focus on collaboratively exploring strategies to address disease-related challenges.
To ensure cultural relevance, six of the sessions were specifically tailored to address issues identified as important by African American women with SLE, including complications of SLE, non-pharmacological recommendations such as self-monitoring, ‘Coping’, ‘Trust’, ‘Body Image’, and ‘Sexuality/Sexual Health’. These topics were selected based on prior research by the PI and community input, aiming to address both cultural factors and unmet psychosocial needs.
Participants randomized to the control group participated in biweekly passive social support sessions moderated by a PALS Study Coordinator. These sessions provided opportunities for African American women with SLE to interact and support one another; however, no structured educational content or disease self-management guidance was provided.
Patient Reported Outcome Measure
For all groups, study assessments were completed at four timepoints: baseline, mid-intervention (3 months), 6 months post-intervention, and 12 months post-intervention. The primary outcome was self-reported lupus disease activity over the past three months, measured using the Systemic Lupus Activity Questionnaire (SLAQ)19. The SLAQ captures three indices: the level of any lupus flare (SLAQ 1), the severity of lupus symptoms (SLAQ 2), and the level of lupus activity (SLAQ 3). Clear examples and guidance were provided in the survey instructions and during study sessions to help participants interpret symptom severity and select the response option that best reflected their experience.
Statistical Analysis
Information captured on participants in the PALS mentorship intervention study included age in years, highest level of education achieved, marital status, employment status, level income, whether subject had insurance, and self-reported measure of organ damage in Systemic Lupus Erythematosus (SA-BILD).
Demographics and clinical characteristics were summarized by the control, intervention, and mentor groups of study participants. Differences in the characteristics by study groups for continuous variables were summarized using means and standard deviations (SD), and differences in categorical variables were summarized using proportions for each categorical subset in the respective treatment group.
We conducted both unadjusted and adjusted analyses to examine the effects of the peer mentoring intervention on lupus disease activity and flare outcomes. Disease activity was assessed using the following item from the SLAQ: “Please rate the disease activity of your lupus during the past 3 months, where 0 is no activity and 10 is the most activity.” Flare severity was measured using another SLAQ item: “In the past 3 months, have you had a lupus flare?” with response categories of 0 = No flare, 1 = Mild flare, 2 = Moderate flare, and 3 = Severe flare.
A cumulative logit mixed model was used to assess the ordinal outcome of flare severity across the intervention groups. Linear mixed models were fitted to evaluate changes in continuous SLAQ outcomes (e.g., disease activity scores) over time. Analyses were conducted across four data collection time points: baseline, 3 months, 6 months, and 12-month post-intervention follow-up. For each outcome, an adjusted model was fit controlling for potential confounders, including age, level of education, employment status, insurance coverage, marital status, income level, and SA-BILD using a forward stepwise selection to select the final multivariable model. The models included fixed effects for group, time, and their interaction as well as a random subject effect to account for within-subject correlation due to repeated measures. Missing data was handled under the assumption of missing at random using maximum likelihood estimation. All statistical analyses were performed using R version 4.1.3, and statistical significance was defined as a two-tailed p < 0.05. Statistical assumptions were assessed graphically with transformations performed as necessary.
3 |. Results
The demographic and clinical characteristics of the study cohort are summarized in Table 1. All participants were adult African American females with physician-confirmed diagnoses of SLE according to the 2019 EULAR/ACR classification criteria. The diagnosis was supported by serologic confirmation, including positivity for antinuclear antibodies (ANA) and/or anti-double-stranded DNA (anti-dsDNA) or anti-Smith (Sm) antibodies, and evidence of complement involvement. Of the 336 included participants, 137 (40.77%) were in the control group, 137 (40.77%) were in the intervention group (mentees), and 62 (18.45%) were mentors. In total, the greatest proportions of participants were between the ages of 25 and 44 (50.48%), were college graduates (42.81%), were unmarried (74.52%), made less than $65,000 in household income (67.73%), were unemployed (56.7%), and had health insurance (94.2%). A significantly greater proportion in the intervention group were unemployed relative to the control group (65.7% of intervention vs. 51.5% of control; p-value = 0.025).
Table 1.
Demographic Characteristics of Participants in the Peer Approaches to Lupus Self-Management Study (PALS-2)
| Overall | Control | Intervention | p-value | Mentor | |
|---|---|---|---|---|---|
| Number of Subjects Across Visits | 336 | 137 (40.77%) | 137 (40.77%) | 62 (18.45%) | |
| Baseline | 320 | 136 (42.5%) | 137 (42.81%) | 47 (14.69%) | |
| 3-Month Post-Intervention | 285 | 122 (41.08%) | 118 (39.73%) | 57 (19.19%) | |
| 6-Month Post-Intervention | 295 | 124 (42.03%) | 119 (40.34%) | 52 (17.63%) | |
| 12-Month Post-Intervention | 270 | 118 (43.70%) | 110 (40.74%) | 42 (15.56%) | |
| Age (Years): n (%) | 0.452 | ||||
| ≤ 24 | 28 (8.95%) | 12 (9.30%) | 15 (10.95%) | 1 (2.13%) | |
| 25 – 34 | 76 (24.28%) | 33 (25.58%) | 35 (25.55%) | 8 (17.02%) | |
| 35 – 44 | 82 (26.20%) | 29 (22.48%) | 41 (29.93%) | 12 (25.53%) | |
| 45 – 54 | 63 (20.13%) | 30 (23.26%) | 20 (14.60%) | 13 (27.66%) | |
| 55 – 64 | 52 (16.61%) | 22 (17.05%) | 21 (15.33%) | 9 (19.15%) | |
| ≥ 65 | 12 (3.83%) | 3 (2.33%) | 5 (3.65%) | 4 (8.51%) | |
| Education Level: n (%) | 0.150 | ||||
| < High School Graduate | 26 (8.31%) | 12 (9.16%) | 13 (9.56%) | 1 (2.17%) | |
| High School Graduate | 55 (17.57%) | 22 (16.79%) | 30 (22.06%) | 3 (6.52%) | |
| Some College | 98 (31.31%) | 38 (29.01%) | 50 (36.76%) | 10 (21.74%) | |
| College Graduate | 134 (42.81%) | 59 (45.04%) | 43 (31.62%) | 32 (69.57%) | |
| Married: n (%) | 80 (25.48%) | 30 (23.08%) | 34 (24.82%) | 0.775 | 16 (34.04%) |
| Yearly Income (USD): n (%) | 0.076 | ||||
| < $15,000 | 83 (26.52%) | 29 (22.48%) | 51 (37.23%) | 3 (6.38%) | |
| $15,000 – $34,999 | 72 (23.00%) | 35 (27.13%) | 27 (19.71%) | 10 (21.28%) | |
| $35,000 – $64,999 | 57 (18.21%) | 25 (19.38%) | 17 (12.41%) | 15 (31.91%) | |
| ≥ $65,000 | 40 (12.78%) | 13 (10.08%) | 14 (10.22%) | 13 (27.66%) | |
| Unknown | 61 (19.49%) | 27 (20.93%) | 28 (20.44%) | 6 (12.77%) | |
| Unemployed: n (%) | 178 (56.70%) | 67 (51.50%) | 90 (65.70%) | 0.025 | 21 (44.70%) |
| Insured: n (%) | 294 (94.20%) | 123 (95.30%) | 125 (91.20%) | 0.226 | 46 (100%) |
| SA-BILD: mean (SD) | 2.61 (2.66) | 2.42 (2.33) | 2.86 (3.04) | 0.179 | 2.40 (2.32) |
| Severity of Lupus Flare: n (%) | 0.680 | ||||
| No Flare | 100 (31.95%) | 42 (32.56%) | 39 (28.47%) | 19 (40.43%) | |
| Mild Flare | 120 (38.34%) | 47 (36.43%) | 54 (39.42%) | 19 (40.43%) | |
| Moderate Flare | 67 (21.41%) | 26 (20.16%) | 33 (24.09%) | 8 (17.02%) | |
| Severe Flare | 26 (8.31%) | 14 (10.85%) | 11 (8.03%) | 1 (2.13%) | |
| Severity of Total Symptoms in Past 3 Months: mean (SD) | 18.67 (11.59) | 18.61 (11.99) | 20.21 (11.59) | 0.263 | 14.34 (9.29) |
| Disease Activity in Past 3 Months: mean (SD) | 44.51 (28.57) | 45.57 (30.04) | 45.01 (26.55) | 0.874 | 40.30 (30.30) |
Note: Comparisons depicted in table (p-values) are made between the control and intervention groups only.
The majority of participants presented with classic clinical manifestations of adult-onset SLE, with mucocutaneous (rash) and musculoskeletal (arthritis and arthralgia) features reported as the most prevalent. Constitutional symptoms such as fever, weight loss, and night sweats were observed in all enrolled participants. The majority of participants reported a mild or no flare in the past 3 months (70.29%), and the mean score for disease activity (SLAQ 3) over the past three months was 44.51 (SD: 28.57).
All other demographic and clinical characteristics were comparable between the control and intervention groups. Additionally, comparisons between the control and intervention groups to the mentor group demonstrated that a significantly greater proportion of mentors were college graduates relative to subjects in the control and intervention groups (69.6% of mentors vs. 45.0% of control and 31.6% of experimental; p-value = 0.001) while greater proportions of participants in the control and intervention group had achieved a level of education no greater than as a high school graduate relative to participants serving as mentors (24.8% of control and 31.4% of intervention vs. 8.7% of mentors; p-value = 0.001). The level of income was also significantly lower in the intervention group with a greater proportion of participants with less than $15,000 income relative to the control and mentor groups (37.2% of intervention vs. 22.5% of control vs. 6.4% of mentors; p-value < 0.001). There were significantly more unemployed participants in the intervention group relative to the control and mentor groups (65.7% of intervention vs. 51.5% of control and 44.7% of mentors; p-value = 0.012). Additionally, participants in the intervention and control groups had significantly greater severity of lupus symptoms in the past 3 months as measured by SLAQ relative to mentors (20.2 in the intervention vs. 18.6 in the control vs. 14.3 in the mentors; p-value = 0.011). The remaining demographic and clinical characteristics (age, marital status, insurance status, SA-BILD, severity of lupus flare, and disease activity in the past three months) were comparable between all three groups.
Study outcomes comparing whether any significant association exists between SA-BILD measures and the measures of disease activity determined by the three SLAQ outcomes, adjusting for employment and insurance status, are summarized in Table 2. For the model fit on the level of any lupus flare (SLAQ 1) as the outcome, the level of any lupus flare in the last three months was significantly associated with insurance status, where participants with insurance had an approximate 79.6% decrease in the odds of having no flare relative to any lupus flare for participants without insurance. This approximate decrease in odds was proportional across the ordinal thresholds. There were no additional variables significantly associated with the level of lupus flare.
Table 2.
Summary of fixed effects estimates from adjusted mixed models examining associations between mentees, visit time, and key covariates with SLAQ outcomes (1- Lupus flare frequency, 2- Symptom severity, and 3- Disease activity)
| SLAQ 1 | SLAQ 2 | SLAQ 3 | ||||
|---|---|---|---|---|---|---|
| Predictor | Estimate (95% CI) | p-value | Estimate (95% CI) | p-value | Estimate (95% CI) | p-value |
| Treatment | 0.638 | < 0.001 | 0.122 | |||
| Mentees (Intervention) | 1.352 (0.874, 2.090) | 2.025 (0.484, 3.568) | 1.656 (−1.907, 5.216) | |||
| Mentors | 1.208 (0.776, 1.882) | 1.888 (0.329, 3.448) | 3.101 (−0.521, 6.725) | |||
| Visit | 0.521 | 0.394 | 0.918 | |||
| 3-Month Post-Intervention | 0.798 (0.577, 1.102) | 0.172 (−0.682, 1.022) | 0.915 (−2.155, 3.974) | |||
| 6-Month Post-Intervention | 1.102 (0.850, 1.429) | −0.527 (−1.179, 0.127) | −0.221 (−2.717, 2.278) | |||
| 12-Month Post-Intervention | 1.228 (0.953, 1.583) | 0.350 (−0.324, 1.025) | 0.062 (−2.429, 2.557) | |||
| SA-BILD | 1.027 (0.921, 1.146) | 0.630 | 0.306 (0.018, 0.597) | 0.039 | 0.046 (−0.97, 1.068) | 0.930 |
| Employed | 0.559 (0.298, 1.047) | 0.069 | −4.058 (−6.295, −1.823) | < 0.001 | −5.746 (−10.879, −0.619) | 0.030 |
| Insured | 0.204 (0.051, 0.819) | 0.025 | −6.728 (−11.601, −1.856) | 0.007 | −7.162 (−18.287, 3.964) | 0.211 |
| Treatment*Visit | 0.795 | 0.048 | 0.161 | |||
| Mentees: 3-Month Post-Intervention |
0.930 (0.681, 1.271) | −0.071 (−0.887, 0.744) | 0.526 (−2.455, 3.505) | |||
| Mentors: 3-Month Post-Intervention |
1.138 (0.834, 1.552) | −0.031 (−0.848, 0.786) | −3.186 (−6.165, −0.202) | |||
| Mentees: 6-Month Post-Intervention |
1.215 (0.887, 1.664) | 1.080 (0.271, 1.888) | 2.562 (−0.484, 5.609) | |||
| Mentors: 6-Month Post-Intervention |
1.022 (0.746, 1.401) | 0.652 (−0.160, 1.463) | −0.363 (−3.440, 2.717) | |||
| Mentees: 12-Month Post-Intervention |
1.021 (0.750, 1.389) | −0.243 (−1.067, 0.582) | −1.475 (−4.516, 1.566) | |||
| Mentors: 12-Month Post-Intervention |
0.853 (0.625, 1.163) | −0.268 (−1.095, 0.560) | 3.047 (−0.026, 6.120) | |||
The severity of lupus symptoms in the last three months was significantly associated with treatment group, participant’s SA-BILD measure, employment status, insurance status, and the interaction between treatment and time. Specifically, at baseline when holding all other covariates constant, participants in the intervention group had approximately 2.03 units greater total symptom severity and participants in the mentor group had approximately 1.89 units greater total symptom severity relative to the Control group. At the 3-month post-intervention visit, participants in the intervention group had approximately 2.13 units greater total symptom severity, and participants in the mentor group had approximately 2.03 units greater total symptom severity relative to the Control group. At the 6-month post-intervention visit, participants in the intervention group had approximately 2.58 units greater total symptom severity, and participants in the mentor group had approximately 2.01 units greater total symptom severity relative to the Control group. Lastly, at the 12-month post-intervention visit, participants in the intervention group had approximately 2.13 units greater total symptom severity, and participants in the mentor group had approximately 1.97 units greater total symptom severity relative to the Control group. Additionally, a 1-unit increase in the SA-BILD measure was associated with an approximate 0.31-point increase in total symptom severity. Employed participants were associated with an approximate 4.06-unit decrease in total symptom severity relative to unemployed participants, and insured participants were associated with an approximate 6.73-unit decrease in total symptom severity relative to non-insured participants. There were no additional variables significantly associated with total symptom severity.
For the model fit on the level of lupus activity (SLAQ 3) as the outcome, the level of lupus activity in the last three months was associated with employment status, where employed participants had an approximate 5.75-unit decrease in disease activity over the past three months relative to unemployed participants. There were no additional variables significantly associated with the level of lupus activity.
Examination of the SLAQ outcomes over time is summarized in Table 3 and displayed in Figure 1 for the intervention groups. For the ordinal outcome of the level of lupus flare, the summaries depict the odds ratios between the intervention groups at a specific time and within the groups across time, whereas for the continuous outcome of total symptom severity and level of lupus activity, the summaries represent the estimated marginal mean difference between the intervention groups at each time and within the intervention groups across time.
Table 3.
Summary of changes in Systemic Lupus Activity Questionnaire (SLAQ) measures overtime (Baseline, 3, 6, and 12-month post-intervention)
| Estimated SLAQ Measures | Baseline to 3-Months | Baseline to 6-Months | Baseline to 12-Months | |||
|---|---|---|---|---|---|---|
| Over Time | Estimate (95% CI) | p-value | Estimate (95% CI) | p-value | Estimate (95% CI) | p-value |
| SLAQ 1: Est. Odds Ratios | ||||||
| Control | 0.554 (0.303, 1.012) | 0.055 | 0.591 (0.325, 1.075) | 0.085 | 0.924 (0.503, 1.698) | 0.800 |
| Mentees | 0.805 (0.435, 1.490) | 0.490 | 0.866 (0.470, 1.598) | 0.646 | 0.972 (0.519, 1.820) | 0.929 |
| Mentors | 0.849 (0.318, 2.272) | 0.745 | 0.534 (0.204, 1.399) | 0.202 | 0.711 (0.267, 1.896) | 0.496 |
| Control vs. Mentees | 0.487 | 0.596 | 0.791 | |||
| Control vs. Mentors | 0.307 | 0.800 | 0.462 | |||
| Mentees vs. Mentors | 0.246 | 0.688 | 0.379 | |||
| SLAQ 2: Est. Marginal Means | ||||||
| Control | 0.451 (−1.169, 2.071) | 0.585 | 0.005 (−1.607, 1.618) | 0.995 | −0.863 (−2.493, 0.797) | 0.299 |
| Mentees | −0.017 (−1.673, 1.639) | 0.984 | −0.069 (−1.705, 1.587) | 0.944 | −0.490 (−2.168, 1.188) | 0.566 |
| Mentors | −2.532 (−4.952, −0.112) | 0.040 | 0.588 (−1.966, 3.142) | 0.652 | 0.848 (−1.745, 3.441) | 0.521 |
| Control vs. Mentees | 0.937 | 0.913 | 0.686 | |||
| Control vs. Mentors | < 0.001 | 0.005 | 0.009 | |||
| Mentees vs. Mentors | < 0.001 | 0.006 | 0.011 | |||
| SLAQ 3: Est. Marginal Means | ||||||
| Control | 0.899 (−4.979, 6.776) | 0.764 | −2.855 (−8.703, 2.994) | 0.338 | −3.810 (−9.738, 2.117) | 0.207 |
| Mentees | 1.686 (−4.356, 7.727) | 0.584 | 5.379 (−0.629, 11.388) | 0.079 | 2.016 (−4.063, 8.095) | 0.515 |
| Mentors | −5.994 (−15.268, 3.279) | 0.205 | −5.085 (−14.392, 4.222) | 0.284 | −3.219 (−12.532, 6.095) | 0.498 |
| Control vs. Mentees | 0.882 | 0.424 | 0.949 | |||
| Control vs. Mentors | 0.050 | 0.073 | 0.149 | |||
| Mentees vs. Mentors | 0.129 | 0.178 | 0.317 | |||
Figure 1.
Estimated Average Systemic Lupus Activity Questionnaire (SLAQ 1) A: the level of any lupus flare, SLAQ 2 B: the severity of lupus symptoms, and SLAQ 3 C: the level of lupus activity measures over time by treatment.
Although examination of SLAQ outcomes for the control group who received passive unstructured social support demonstrated relative stability in disease burden over the 12-month follow-up, participants in the mentor group had a significant decrease in estimated total symptom severity from baseline to the 3-months post-intervention visit. Patients in the mentor group had a significant difference in the estimated change of total symptom severity from baseline to 3-months (mean difference: −2.53; 95% CI: −4.95, −0.11) relative to the intervention (mean difference: −0.02; 95% CI: −1.67, 1.64; p < 0.001) and control (mean difference: 0.45; 95% CI: −1.17, 2.07; p < 0.001) groups; in the estimated change of total symptom severity from baseline to 6-months (mean difference: 0.59; 95% CI: −1.97, 3.14) relative to the intervention (mean difference: −0.06; 95% CI: −1.71, 1.59; p = 0.006) and control (mean difference: 0.01; 95% CI: −1.61, 1.62; p = 0.005) groups; and in the estimated change of total symptom severity from baseline to 12-months (mean difference: 0.85; 95% CI: −1.75, 3.44) relative to the intervention (mean difference: −0.49; 95% CI: −2.17, 1.19; p = 0.011) and control (mean difference: −0.86; 95% CI: −2.49, 0.77; p = 0.009) groups. Additionally, patients in the mentor group had a significant difference in the estimated change in level of lupus activity from baseline to 3-months (mean difference: −5.99; 95% CI: −15.27, 3.28) relative to the control (mean difference: 0.90; 95% CI: −4.98, 6.78; p = 0.05) group. There were no additional significant differences observed in the three respective models.
3 |. Discussion
This study analyzed longitudinal data from the PALS trial (The Peer Approaches to Self-Management15) to assess the impact of a culturally tailored peer mentoring intervention on disease activity among African American women with SLE. Using a cumulative logit mixed model and linear mixed-effects models for SLAQ outcomes, we evaluated changes in disease flare frequency, symptom severity, and perceived lupus activity across three groups: mentees, mentors, and social support controls at baseline, 3 months, 6 months, and 12 months after the intervention. Our results showed that participants in the intervention group (mentees) who received the peer mentoring intervention demonstrated a substantial increase in perceived lupus activity from baseline to post-intervention in adjusted models, though not statistically significant. While this increase may initially appear counterintuitive, it is possible that participation in the peer mentoring sessions improved adherence to non-pharmacological treatments, such as increasing self-awareness and symptom recognition, leading to higher self-reported disease activity without reflecting clinical worsening.
Peer mentoring has emerged as a valuable approach in the management of chronic diseases, offering both educational reinforcement and essential psychosocial support20, 21. Studies in diabetes have demonstrated that individuals with inadequate peer group support (79.7%) are less likely to engage in preventive behaviors, such as proper foot care, compared to those receiving consistent support12, 22, 23. Peer group interactions provide more than just knowledge; they offer motivation, companionship, and a platform to discuss personal challenges openly15, 24. Such support fosters a sense of safety and comfort, which is crucial for encouraging patients to adopt and sustain healthier behaviors12. Peers also act as role models and sources of inspiration, encouraging others to improve their disease management strategies through shared experiences and mutual accountability25. Moreover, the presence of peer support has not only been associated with improved health behaviors but also enhances psychological outcomes such as self-esteem, identity, and the perceived ability to manage disease-related complications15, 25, 26.
Peer support mentoring interventions and related interactive educational programs have been shown to significantly improve adherence to prescribed treatments among SLE patients. According to the pilot study involving adolescents and young adults with SLE using a web-based educational program, demonstrated a significant improvement in adherence to physician-prescribed hydroxychloroquine27, 28. For participants who were not already 100% adherent, participation in the study led to an improvement in Medication Possession Ratio (MPR) from 69% to 93%. Beyond pharmacological compliance, culturally tailored, peer-based interventions have also been shown to significantly enhance non-pharmacological self-management among individuals living with SLE, who often face unique psychosocial and physical burdens9. Peer support interventions contribute to improved coping strategies and greater perceived social connectedness29. Patients managing lupus-related stress, stigma, and reduced physical function may benefit from interacting with peers who share similar experiences and strategies30. These interventions can foster patient activation and engagement in one’s own care, which is associated with improved outcomes and reduced disease activity31, 32.
Our findings also highlight the influence of social determinants, particularly employment and insurance status, on SLE outcomes. Participants who were employed or insured experienced lower symptom severity and disease activity than their unemployed or uninsured counterparts. These findings suggest that employment may reflect greater functional status, stability, or resilience, all of which may contribute to better self-management. Similarly, insurance coverage likely facilitates access to timely and appropriate care, which may help prevent disease flares and manage symptoms more effectively. An earlier study conducted by Brown et al., found that Medicaid expansion states had higher preventable lupus hospitalizations so this finding is a very positive one. It is likely to take time for new coverage to impact primary and specialty outpatient care needed to prevent disease flares and manage symptoms33 This finding aligns with prior studies showing that public insurance programs like Medicaid play a critical role in improving disease management and reducing acute care needs in lupus populations. Given that lupus disproportionately affects individuals with limited financial resources, ensuring continuous and equitable insurance access may be essential for addressing health disparities.
Health literacy emerged as another key factor. A lower level of education was linked to increased disease activity34 and worse patient-reported outcome scores as reported by Katz et al.35. Interestingly, in our sample, greater proportions of participants in the control and mentee groups had achieved a level of education no greater than a high school graduate, indicating the need for health education that can be provided to this vulnerable group through telemedicine and remote sessions. Improved patient education regarding possible symptoms and indicators could result in early detection and treatment, which could empower them to engage more actively in disease self-management.5.
These findings should also be interpreted in the context of persistent racial disparities in lupus outcomes. African American women are disproportionately affected by SLE, with higher rates of severe disease manifestations, depression, and end-stage organ damage compared to other racial groups4, 5, 9, 29. The use of race- and gender-matched mentors in our study aligns with existing evidence showing that patients respond more positively to health interventions delivered by individuals who share similar cultural backgrounds. This model also supports broader health equity goals, including efforts to diversify the healthcare workforce through pipeline programs that recruit and train individuals from underrepresented communities15.
The associations observed between insurance status, employment, and disease outcomes in our study suggest that targeted policies addressing these social determinants could reduce symptom burden and disease activity in SLE. Our findings support the integration of culturally appropriate peer-mentoring programs into publicly funded chronic disease initiatives, particularly for individuals facing systemic barriers to care. Programs that facilitate access to insurance and vocational support services may further improve disease self-management and reduce disparities. Policymakers should consider telehealth-based peer support models as scalable, cost-effective tools to enhance patient engagement in underserved populations.
This study presents several strengths. The inclusion of mentors and social support controls as distinct analytical groups adds depth to the interpretation of findings. The use of longitudinal mixed-effects modeling allowed for a nuanced analysis of time-dependent changes while accounting for confounding variables36. Moreover, the study design was informed by community engagement and cultural tailoring, which strengthens its applicability to real-world settings.
However, the study is not without limitations. First, disease activity and symptom burden were assessed using patient-reported measures (SLAQ), which may be influenced by perception or recall bias and do not capture objective clinical indicators. Although the intervention targeted adherence to central non-pharmacological lupus self-management strategies such as such as coping, stress management, and self-monitoring, we did not include quantitative adherence metrics to confirm these changes, as the primary aim of this study was to evaluate the effect of peer mentoring on disease activity outcomes, and so adherence to physician-prescribed treatments and non-pharmacological recommendations was not directly measured. Future studies should expand upon these findings by integrating physician-reported measures and objective indicators of behavioral adherence to better capture both clinical and non-pharmacological effects of peer mentoring.
Conclusion
In line with our previous projects, the long-term objective of this study is to enhance the quality of life and disease self-management while lowering disease activity indices among adult African American women with SLE and other chronic conditions. The results of our study offer a foundation for guiding state-level policy and resource allocation efforts aimed at improving SLE outcomes in a wide range of geographic regions with comparable demographic and health disparities.
Funding statement:
Research reported in this publication was supported by the National Institute of Nursing Research of the National Institutes of Health under Award Number R01NR017892. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.
Footnotes
Ethics Approval & Consent to participate: The study protocol has been approved by the IRB of the Medical University of South Carolina (MUSC) (Pro00080875). Informed consent was obtained from all study participants prior to their participation in the study. Any changes to the study procedures were first proposed to the IRB.
Declaration of conflicting interest: The authors declare no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Contributor Information
Edith M. Williams, Professor, Director, Center for Community Health & Prevention and Office of Health Equity Research, University of Rochester Medical Center, Rochester, New York, USA..
S. Yasamin Parvar, Department of Public Health Sciences at the University of Rochester School of Medicine and Dentistry, Rochester, New York..
Everette Keller, Candidate | Biostatistics, Department of Public Health Sciences, Medical University of South Carolina.
Paul J. Nietert, Professor, Department of Public Health Sciences, Medical University of South Carolina, Charleston, SC, 29425, USA.
Clara L Dismuke-Greer, Health Economics Resource Center (HERC), VA Palo Alto Health Care System, CA.
Hetlena Johnson, Lupus Columbia South Carolina, Columbia, South Carolina..
Joni S. Williams, Associate Professor, Director, Center for Advancing Population Science (CAPS), Milwaukee Community Chair in Health Equity Research at the Medical College of Wisconsin.
Jim Oates, Medical Service, Ralph H Johnson VA Medical Center, Charleston, South Carolina, USA; Department of Medicine, Division of Rheumatology and Immunology, Medical University of South Carolina, Charleston, South Carolina, USA.
Data availability statement:
The data that support the findings of this study are available on request from the corresponding author. The data are not publicly available due to privacy and ethical restrictions.
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Associated Data
This section collects any data citations, data availability statements, or supplementary materials included in this article.
Data Availability Statement
The data that support the findings of this study are available on request from the corresponding author. The data are not publicly available due to privacy and ethical restrictions.