Background African American women are disproportionately affected by SLE, but remain underrepresented in research studies. To further knowledge about the diversity of this health disparity group, the goal of this study was to investigate sociodemographic, behavioral, clinical characteristics, and their impact on SLE disease outcomes, in African American women from South Carolina.

Methods Adult self-reported African American women meeting the 1997 ACR revised or 2012 SLICC classification criteria for SLE, or controls without any known connective tissue disease, were recruited for the Social Factors, Epigenomics and Lupus in African American Women (SELA) study. SLE activity was self-reported using the Systemic Lupus Activity Questionnaire (SLAQ), and damage was self-reported using the Brief Index of Lupus Damage (BILD). Racial discrimination was measured using the Experiences of Discrimination (EOD) measure. A Welch two sample t-test was computed for the associations between EOD and SLAQ, and Wilcoxon rank sum tests with continuity correction was computed for the associations between EOD and BILD.

Results This preliminary study included 50 female African Americans, including 28 with SLE. In total, 74% of participants had a college degree, 53% had private health insurance, and 45% were employed. The majority were non-smokers (86%), rarely or never drank (76%), and exercised at least weekly (57%). Hypertension (51%), asthma (25%) and depression (18%) were the most prevalent comorbidities. Among those with SLE, the mean (±SD) age of diagnosis was 29±7 years, disease duration at the SELA visit was 22±9 years, and mean SLE activity score was 9.8±5.7. Most patients (86%) had a damage score of 2 or more, with the remaining 14% having damage to 1 organ or system, and overall mean damage score was 3.4±2.2. Half (53%) of all participants reported experiencing racial discrimination. In an exploratory analysis, there was no association between racial discrimination and presence of SLE, level of SLE activity, nor damage. Participant engagement with SELA aims is high, evidenced by 81% of participants wishing to be included in this study’s progress, 71% wanting to provide feedback and research suggestions, and all requesting to receive their genetic ancestry estimates.

Conclusions The preliminary results of this exploratory analysis are distinct from those of the Black Women’s Experiences Living with Lupus (BeWELL) Study, where most participants reported experiencing racial discrimination, and racial discrimination had a significant relationship with SLE activity. Given the cultural and genetic heterogeneity and disproportionate impact of SLE in African American communities, continued recruitment into this ongoing study will enhance our knowledge about SLE in diverse African Americans.