OF THE PARENT GRANT The parent grant (R01NR017892 Peer Approaches to Lupus Self-Management PALS) is a randomized controlled trial designed to examine whether a new, culturally tailored peer mentoring intervention improves disease self-management, indicators of disease activity, and health related quality of life (HRQOL) in African American women with systemic lupus erythematosus (SLE). Systemic lupus erythematosus (SLE or lupus) is a chronic autoimmune disease that is associated with increased morbidity, mortality, healthcare costs and decreased quality of life. African Americans in the USA have three to four times greater prevalence of SLE, risk of developing SLE at an earlier age, and SLE-related disease activity, damage, and mortality compared with Caucasians, with the highest rates experienced by African American women. There is strong evidence that patient-level factors are associated with outcomes, which justifies targeting them with intervention. While evidence-based self-management interventions that incorporate both social support and health education have reduced pain, improved function, and delayed disability among patients with SLE, African Americans and women are still disproportionately impacted by SLE. Peer mentoring interventions are effective in other chronic conditions that disproportionately affect minorities, such as diabetes mellitus, HIV, and kidney disease, but there is currently no empirically tested peer mentoring intervention developed for patients with SLE. Preliminary data from our group suggest that peer mentoring improves self-management, reduces disease activity, and improves health-related quality of life (HRQOL) in African American women with SLE. Methods: This study will test an innovative, manualized peer mentorship program designed to provide modeling and reinforcement by peers (mentors) to other African American women with SLE (mentees) to encourage them to engage in activities that promote disease self-management. Through a randomized, ?mentored? or ?support group? controlled design, we will assess the efficacy and mechanism(s) of this intervention in self- management, disease activity, and HRQOL.
This project aims to generate knowledge about the care coordination needs of African American women with systemic lupus erythematosus (SLE), a group with a greater disease burden, and more complex and fatal outcomes compared to non-African Americans with this disease. By studying the provider and system-level factors that contribute to care fragmentation, this project supports the development of care coordination strategies that promote continuity in care, reduce disease burden, and improve patient outcomes, while maintaining a patient-centered approach. This study will extend Aim 2 of the parent project (R01NR017892 Peer Approaches to Lupus Self-Management PALS).
