Background/Purpose: Systemic Lupus Erythematosus (SLE) is a chronic autoimmune disease that is associated with increased morbidity, mortality, health care costs and decreased quality of life. In the United States, African Americans have three to four times greater burden of lupus compared with Caucasians, with the highest rates experienced by African American women. While evidence-based self-management interventions that incorporate social support and health education have reduced pain, improved function, and delayed disability among lupus patients, persistent disparities may be due to the non-responsiveness of existing programs to the unique needs of African Americans and/or women with lupus. Peer mentoring interventions are effective in other chronic conditions that disproportionately affect minorities, such as diabetes, HIV, and kidney disease, but there is currently no empirically tested peer mentoring intervention developed for SLE patients.

Methods: A literature review, needs assessment, and patient interviews guided the development of a peer mentoring training manual and intervention. The intervention was piloted with African American women with lupus participating in the SLE database at the Medical University of South Carolina. Seven mentors were trained and paired with 21 mentees to encourage mentees to engage in activities that promote the learning of disease self-management skills and to support the mentees’ practice of these learned skills by telephone for at least 60 minutes every week for 12 weeks. Mentee outcomes of self-management, disease progression (including disease activity, damage, and cytokine balance) were obtained at baseline, mid-intervention (6 weeks from baseline), and immediately post-intervention (12 weeks from baseline), using validated tools. All participants met at least four components of the 1997 ACR revised criteria for SLE. Descriptive statistics and effect sizes will be calculated to determine clinically important (>0.3) changes.

Results: Preliminary data from the PALS pilot study suggest that the peer mentoring intervention is credible, acceptable and likely to be effective at improving self-management, decreasing disease activity and improving quality of life in women with SLE. Between baseline and 6 weeks (mid-intervention), mentees (n=20) reported increased social support; improved physical functioning, general health, social functioning, vitality, and patient activation; and decreased physical limitation, bodily pain, and emotional limitation. Observed changes exceeded the clinically meaningful level of 0.3, suggesting that the intervention will likely be effective at 12 weeks. At 6 weeks, both mentees (n=20) and mentors (n=7) gave high ratings for perception and credibility of the intervention. Post-intervention (12 week) data is currently being analyzed and will be shared.

Conclusion: Given the success of the peer mentoring approach, and its responsiveness to the needs of this unique population, this intervention could result in health improvements that have not been attainable with other interventions. This could lead to significant reductions in disparities and have considerable public health impact.

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/peer-approaches-to-lupus-self-management-pals-a-novel-lupus-peer-mentorship-intervention/