National Institute of Arthritis and Musculoskeletal and Skin DiseasesIncreased Minority Participation in Clinical Research Through Peer–Peer Mentoring Approach
Systemic lupus erythematosus (SLE) is a chronic inflammatory autoimmune disease with diverse manifestations. The data from the Centers for Disease Control and Prevention (CDC) National Lupus Registries and several other lupus cohorts reveal the disproportionately higher susceptibility and increased severity of SLE in people from racial/ethnic minority groups. A combination of genetic, environmental, and socioeconomic factors is responsible for these disparities.
The current management guidelines from various rheumatological societies are based on data generated from clinical research studies where the majority of the participants were White. Even though SLE disease susceptibility and severity differ significantly by race and ethnicity, racial minorities continue to be underrepresented in SLE clinical trials. This is most striking for African Americans, according to recently reported data. Whites account for 33% of SLE cases and 51% of randomized controlled trial (RCT) participants, whereas African Americans account for 43% of SLE cases but only 14% of RCT participants. Hence, there is a need for data that better represent people with SLE.
The objective of this project is to implement a peer-to-peer mentoring program to help bolster the participation and representation of racial/ethnic minority groups in SLE clinical research. Peer mentoring is a culturally sensitive way to improve health behaviors and outcomes in minority groups. In a qualitative study of predominantly African American women with SLE who were from medically underserved communities, 69% of the study participants favored a peer support intervention to improve care. The preliminary data from the Peer Approaches to Lupus Self-Management (PALS) project revealed that the intervention was well received, resulted in lower disease activity, and improved health-related quality of life.
With this project, Dr. Hasni aims to:
- Establish a peer mentoring program that will allow current participants in lupus clinical research who are from minority groups to share their experiences and information with ethnically matched prospective participants.
- Train the peer mentors to address concerns and dispel common misinformation about participation in clinical trials.
- Educate mentees about the differences in disease severity, response to treatment, and overall outcomes among various racial/ethnic groups with SLE.
- Encourage SLE patients from minority groups, especially African Americans, to participate in lupus clinical research to help generate data that is representative of disease prevalence.