Lupus in rural Georgia: investigating research barriers and environmental risk factors

Systemic lupus erythematosus (SLE) disproportionately affects people of color, and the prevalence is the highest in the South, in areas with the lowest socioeconomic status (SES), and among Black patients. Morbidity and mortality disparities exist between urban and rural residents, and rural residents are at a higher risk of chronic conditions, poor health outcomes, and higher mortality due to environmental and social factors. Strikingly, 84% of rural areas do not have a practicing rheumatologist, and some individuals with SLE residing in rural areas may have to travel between 75 and 200 miles to obtain clinical care. Despite these disparities, SLE has been understudied in rural, lower SES areas of the South with significant Black populations and poorer access to specialized SLE care and research. Health disparities in rural regions may be due to social factors and the physical environment. Environmental factors, including pollutants and pesticides, contribute to SLE development; however, the geographical relationship between regions of toxic substance exposure and clusters of lupus prevalence has not been explored. Dr. Williams will investigate these disparities in Georgia, where she will survey rural Georgians with lupus compared to lupus patients living in an urban area to understand research perceptions, barriers to enrollment in lupus research studies, and environmental and social risk factors for SLE and related adverse outcomes.

Dr. Williams will determine if lupus patients in rural Georgia have unique barriers to enrollment in research studies (i.e., mistrust of research, travel burden) compared to those in urban Atlanta. Dr. Williams will gather information on disease severity, medications, healthcare access, social support, psychosocial stressors, and many other factors to develop programs for better addressing the needs and concerns of this population of lupus patients. Social determinants of health account for 30-55% of health outcomes; however, the impact of social determinants of health on lupus patients in rural regions has not been explored. Dr. Williams will also investigate whether geographic clusters of lupus patients residing in rural Georgia are associated with environmental and social risk factors, including proximity to toxic release sites and residence in regions with high social vulnerability. Dr. Williams will then collect biospecimens and detailed questionnaires from lupus patients in rural Georgia to be used in a future investigation of the impact of environmental exposures on lupus.

What this study means for people with lupus:

The findings of Dr. Williams’ study will provide meaningful information on the disparities experienced by lupus patients in rural areas. This information can be leveraged to develop programs to assist lupus patients in rural populations to enroll in research programs. Importantly, this study will systematically analyze the impact of social determinants, including socioeconomic status, household characteristics, racial/ethnic minority status, and housing type, on lupus outcomes. Dr. Williams’ study will provide meaningful information on social and environmental factors underlying lupus in an understudied population.

In the United States (U.S.), systemic lupus erythematosus (SLE) prevalence is highest in the South, in areas with the lowest socioeconomic status, and among Black patients. Despite these disparities, lupus has been understudied in rural, lower SES areas of the South with significant Black populations and poorer access to specialized lupus care and research. The ultimate goals of our proposal are to better understand research barriers and non-genetic risk factors for lupus in rural populations, in order to increase lupus research participation and further elucidate lupus pathogenesis. To better understand the needs and research barriers of patients with lupus residing in the rural South, through Aim 1 of our study, we will recruit and enroll rural Georgians with lupus in a prospective, population-based cohort, the Georgians Organized Against Lupus 2 (GOAL-2) Cohort. Within this cohort, we will explore barriers to further expanding GOAL-2 and enrollment in lupus research and compare responses with our well-established GOAL-1 Cohort residing in urban Atlanta. We will recruit 15 patients from GOAL-1 and 15 patients from GOAL-2 to participate in qualitative interviews to better understand and compare research perceptions and barriers to enrollment in these two distinct populations.

Aim 2 of our study will focus on environmental and social determinants of health risk factors for incident lupus and lupus-related outcomes in rural Georgians, which may differ in rural as compared to urban populations. Specifically, we will determine if geographic clusters of increased lupus incidence, end-stage renal disease (ESRD), mortality, and hospitalizations among patients residing in rural Georgia from 2018-2022 are associated with: 1) residential proximity to Environmental Protection Agency (EPA)­designated toxic release sites and 2) residence in census tracts with high social vulnerability as determined by the Centers for Disease Control/Agency for Toxic Substances and Disease Registry Social Vulnerability Index (CDC/ATSDR SVI). Lastly, for Aim 3 we will recruit 25 GOAL-2 participants with incident lupus to provide blood and urine samples and to respond to detailed questionnaires on current and past environmental exposures, such as pesticides, which will be used for future studies to assess the impact of environmental exposures on incident lupus in this population.