Healthcare disparities exist throughout the United States, and disparities in healthcare delivery are responsible for a substantial portion of preventable morbidity and mortality. SLE disproportionately affects racial and ethnic minoritized groups, including Blacks, Hispanics, and Asians/Pacific Islanders. Specifically, Black females have a 3 to 4-fold increased risk of developing SLE than White females. Population studies funded through the Centers for Disease Control have examined variations in disease outcomes among the different populations around the United States. For example, studies have shown that lupus nephritis, anti-phospholipid syndrome, and thrombocytopenia are more likely to affect racial and ethnic minorities than Whites. In addition, the Center for Disease Control WONDER (Wide-ranging Online Data for Epidemiologic Research) database found SLE was the seventh leading cause of death for all women aged 15–25 years and the fifth leading cause of death for African American and Hispanic females. From these studies, we know SLE primarily affects racial and ethnic minorities, but we do not know why these groups are at increased risk of developing the disease or have worse outcomes. By examining the underlying mechanisms of health disparities within our patient populations and mitigation strategies, we will further understand and provide better treatment for our patients. This review will discuss current research related to health disparities and health outcomes in childhood-onset SLE (cSLE).
IntroductionDespite the disproportional impact of SLE on historically marginalised communities, the individual and sociocultural factors underlying these health disparities remain elusive. We report the design and methods for a study aimed at identifying epigenetic biomarkers associated with racism and resiliency that affect gene function and thereby influence SLE in a health disparity population.Methods and analysisThe Social Factors, Epigenomics and Lupus in African American Women (SELA) Study is a cross-sectional, case–control study. A total of 600 self-reported African American women will be invited to participate. All participants will respond to questionnaires that capture detailed sociodemographic and medical history, validated measures of racial discrimination, social support, as well as disease activity and damage for cases. Participants who wish will receive their genetic ancestry estimates and be involved in research. Blood samples are required to provide peripheral blood mononuclear cell counts, DNA and RNA. The primary goals of SELA are to identify variation in DNA methylation (DNAm) associated with self-reported exposure to racial discrimination and social support, to evaluate whether social DNAm sites affect gene expression, to identify the synergistic effects of social factors on DNAm changes on SLE and to develop a social factors-DNAm predictive model for disease outcomes. This study is conducted in cooperation with the Sea Island Families Project Citizen Advisory Committee.Discussion and disseminationSELA will respond to the pressing need to clarify the interplay and regulatory mechanism by which various positive and negative social exposures influence SLE. Results will be published and shared with patients and the community. Knowledge of the biological impact of social exposures on SLE, as informed by the results of this study, can be leveraged by advocacy efforts to develop psychosocial interventions that prevent or mitigate risk exposures, and services or interventions that promote positive exposures. Implementation of such interventions is paramount to the closure of the health disparities gap.
Introduction Despite the disproportional impact of systemic lupus erythematosus (SLE) on historically marginalized racial and ethnic communities, the individual and sociocultural factors underlying these health disparities remain elusive. We report the design and methods for a study aimed at identifying the epigenetic mechanisms by which risk and resiliency social factors affect gene function and thereby influence SLE in a health disparity population. Methods and analysis The Social Factors, Epigenomics, and Lupus in African American Women (SELA) study is a cross-sectional, case-control study involving the Medical University of South Carolina, Emory University, and Wake Forest School of Medicine. A total of 600 self-reported African American females will be invited to participate. All participants will respond to questionnaires that capture detailed sociodemographic and medical history, validated measures of racial discrimination, vicarious racism stress, social support, healthcare utilization and lost productivity, as well as disease activity and damage for cases. Physician-reported disease activity will also be incorporated Participants will choose if they wish to receive their genetic ancestry estimates and be involved in research. Blood samples are required to provide serum, plasma, PBMCs counts, DNA and RNA. The primary goals of SELA are to identify variation in DNA methylation (DNAm) associated with self-reported exposure to racial discrimination and exposure to social support, to evaluate whether social DNAm sites affect gene expression, to identify the synergistic effects of social factors on DNAm changes on SLE, and to develop a social factors-DNAm predictive model for disease outcomes. This study was approved by and will be conducted in cooperation with the Sea Island Families Project Citizen Advisory Committee. Discussion and dissemination SELA will respond to the pressing need to identify the regulatory mechanisms through which social exposures influence SLE in a health disparity population, clarify the interplay and underlying mechanism by which various positive and negative social determinants of health influence epigenomic variation, and how the resulting biological changes may contribute to the lupus health disparity. Results will be published and shared with patients and the community. These findings may inform the development of psychosocial interventions that prevent or mitigate risk exposures, and services or interventions that promote positive exposures. Development of these novel treatments and preventative interventions, as informed by the results of this study, is paramount to the closure of the health disparities gap.
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