Financial Hardship and Sleep Quality Among Black American Women With and Without Systemic Lupus Erythematosus.

OBJECTIVE: To compare dimensions of financial hardship and self-reported sleep quality among Black women with versus without systemic lupus erythematosus (SLE). METHODS: Participants were 402 Black women (50% with validated diagnosis of SLE) living in Georgia between 2017 and 2020. Black women with SLE were recruited from a population-based cohort established in Atlanta, and Black women without SLE were recruited to be of comparable age and from the same geographic areas as SLE women. Financial hardship was measured using three different scales: financial adjustments, financial setbacks, and financial strain. Sleep was assessed continuously using the Pittsburgh Sleep Quality Index (PSQI) scale. Each dimension of financial hardship was analyzed separately in SLE-stratified multivariable linear regression models and adjusted by sociodemographic and health status factors. RESULTS: Dimensions of financial hardship were similarly distributed across the two groups. Sleep quality was worse in Black women with, versus without, SLE (p < .001). Among Black women with SLE, financial adjustment was positively associated with a 0.40-unit increase in poor sleep quality (95% CI = 0.12-0.67, p = .005). When accounting for cognitive depressive symptoms, financial setbacks and strain were somewhat attenuated for Black women with SLE. Overall, no associations between financial hardships and sleep quality were observed for the women without SLE. CONCLUSIONS: Black women with SLE who experience financial hardships may be more at risk for poor sleep quality than Black women without SLE. Economic interventions targeting this population may help improve their overall health and quality of life.

Choosing to End African American Health Disparities in Patients With Systemic Lupus Erythematosus.

Systemic lupus erythematosus (SLE) is three times more common and its manifestations are more severe in African American women compared to women of other races. It is not clear whether this is due to genetic differences or factors related to the physical or social environments, differences in health care, or a combination of these factors. Health disparities in patients with SLE between African American patients and persons of other races have been reported since the 1960s and are correlated with measures of lower socioeconomic status. Risk factors for these disparities have been demonstrated, but whether their mitigation improves outcomes for African American patients has not been tested except in self-efficacy. In 2002, the first true US population-based study of patients with SLE with death certificate records was conducted, which demonstrated a wide disparity between the number of African American women and White women dying from SLE. Five years ago, another study showed that SLE mortality rates in the United States had improved but that the African American patient mortality disparity persisted. Between 2014 and 2021, one study demonstrated racism's deleterious effects in patients with SLE. Racism may have been the unmeasured confounder, the proverbial "elephant in the room"-unnamed and unstudied. The etymology of "risk factor" has evolved from environmental risk factors to social determinants to now include structural injustice/structural racism. Racism in the United States has a centuries-long existence and is deeply ingrained in US society, making its detection and resolution difficult. However, racism being man made means Man can choose to change the it. Health disparities in patients with SLE should be addressed by viewing health care as a basic human right. We offer a conceptual framework and goals for both individual and national actions.

Avoidable Acute Care Use for Vaccine-Preventable Illnesses Among Medicaid Beneficiaries With Lupus.

OBJECTIVE: Nearly 25% of patients with systemic lupus erythematosus (SLE) are hospitalized yearly, often for outcomes that may have been avoided if patients had received sustained outpatient care. We examined acute care use for vaccine-preventable illnesses to determine sociodemographic contributors and modifiable predictors. METHODS: Using US Medicaid claims from 29 states (2000-2010), we identified adults (18-65 years) with prevalent SLE and 12 months of enrollment prior to the first SLE code (index date) to identify baseline data. We defined acute care use for vaccine-preventable illnesses as emergency department (ED) or hospital discharge diagnoses for influenza, pneumococcal disease, meningococcal disease, herpes zoster, high-grade cervical dysplasia/cervical cancer, and hepatitis B after the index date. We estimated the incidence rate of vaccine-preventable illnesses and used Cox regression to assess risk (with hazard ratios and 95% confidence intervals) by sociodemographic factors and health care utilization, adjusting for vaccinations, comorbidities, and medications. RESULTS: Among 45,654 Medicaid beneficiaries with SLE, <10% had billing claims for vaccinations. There were 1,290 patients with ≥1 ED visit or hospitalization for a vaccine-preventable illness (6.6 per 1,000 person-years); 93% of events occurred in unvaccinated patients. Patients who were Black compared to White had 22% higher risk. Greater outpatient visits were associated with lower risk. CONCLUSION: Medicaid beneficiaries with SLE who are not vaccinated are at risk for potentially avoidable acute care use for vaccine-preventable illnesses. Racial disparities were noted, with a higher risk among Black patients compared to White patients. Greater outpatient use was associated with reduced risk, suggesting that access to ambulatory care may reduce avoidable acute care use.

Age differences in secular trends in black-white disparities in mortality from systemic lupus erythematosus among women in the United States from 1988 to 2017.

OBJECTIVE: To examine the age differences in secular trends in black-white disparities in mortality from systemic lupus erythematosus (SLE) among women in the United States from 1988 to 2017. METHODS: We used mortality data to calculate age-specific SLE and all-causes (as reference) mortality rates and black/white mortality rates ratios among women from 1988 to 2017. Annual percent change was estimated using joinpoint regression analysis. RESULTS: We identified 10,793 and 4,165,613 black women and 19,455 and 31,129,528 white women who died between 1988 and 2017 from SLE and all-causes, respectively. The black/white SLE mortality rate ratio according joinpoint regression model was 6.6, 7.2, 4.4, and 1.4 for decedents aged 0-24, 25-44, 45-64, and 65+ years in 1988 and was 7.2, 5.9, 4.1, and 1.9, respectively in 2017. No significant decline trend was noted and the annual percent change was 0.3%, -0.7%, -0.2%, and 1.0%, respectively. On the contrast, the black/white all-causes mortality rate ratio was 2.0, 2.5, 1.8, and 1.0, respectively in 1988 and was 1.7, 1.3, 1.5, and 0.9, respectively in 2017, a significant decline trend was noted in each age group. CONCLUSIONS: Black adults, youths and adolescents had four to seven times higher SLE mortality rates than their white counterparts and the black-white disparities persisted during the past three decades. On the contrast, black women had less than two times higher all-causes mortality rates than their white counterparts and black-white disparities significantly diminish during the past three decades.

The importance of pregnancy planning in lupus pregnancies.

OBJECTIVE: In seeking new approaches to improve lupus pregnancy outcomes, we study the association between pregnancy planning, behaviors recommended by American College of Rheumatology's Reproductive Health Guideline 2020, and pregnancy and infant outcomes. METHODS: Lupus pregnancies in a prospective registry (1/1/2018 to 4/1/2020) were classified as planned or not-planned using the patient-reported London Measure of Unplanned Pregnancy. These groups were compared for demographics, pre-pregnancy disease activity, pregnancy planning behaviors, and delivery outcomes. RESULTS: Among 43 women with 43 singleton pregnancies the average age was 29.4 years and 42% were Black. Overall, 60% were planned pregnancies and 40% were not-planned (16 ambivalent, 1 unplanned). Women with not-planned pregnancies had lower age, income, and education, and more required Medicaid. Women with not-planned pregnancies were more likely to conceive when lupus activity was higher (p = 0.001), less likely to receive pre-pregnancy counseling with a rheumatologist (p = 0.02), and less likely to continue pregnancy-compatible medications (p = 0.03). Severe PROMISSE adverse pregnancy outcomes (APOs) and severe neonatal outcomes were higher among women with not-planned than planned pregnancies (43% vs 0% p = 0.003; 70% vs 30% p = 0.06). CONCLUSION: This study identifies pregnancy intention as a potentially modifiable risk factor for poor outcomes in women with lupus. It highlights a unique population of women with lupus at high risk for pregnancy and infant complications: those ambivalent about pregnancy. These women may not be effectively engaging in health behaviors that prevent pregnancy nor those that will prepare for a safe pregnancy. With effective pregnancy planning and contraception guidance, we may decrease their risk for maternal-fetal morbidity and mortality.

Racial Differences in Contraception Encounters and Dispensing Among Female Medicaid Beneficiaries With Systemic Lupus Erythematosus.

OBJECTIVE: African American and Hispanic women with systemic lupus erythematosus (SLE) have the highest rates of potentially avoidable pregnancy complications, yet racial disparities in family planning among reproductive-age women with SLE have not been well-studied. Our objective was to examine whether there are racial differences in contraception encounters and dispensing among US Medicaid-insured women with SLE. METHODS: Using Medicaid claims data from 2000-2010, we identified women ages 18-50 years with SLE. We examined contraception encounters and uptake over 24 months. We used multivariable logistic regression to estimate the odds ratio and 95% confidence interval by race/ethnicity of contraception encounters, any contraception dispensing, and highly effective contraception (HEC) use, adjusted for age, region, year, SLE severity, and contraindication to estrogen. We also compared contraception encounters and dispensing among women with SLE to the general population and women with diabetes mellitus. RESULTS: We identified 24,693 reproductive-age women with SLE; 43% were African American, 35% White, 15% Hispanic, 4% Asian, 2% other race, and 1% American Indian/Alaska Native. Nine percent had a contraceptive visit, 10% received any contraception, and 2% received HEC. Compared to White women, African American and Asian women had lower odds of contraception dispensing, and African American women had lower odds of HEC use. Women with SLE were more likely to receive HEC than the general population and women with diabetes mellitus. CONCLUSION: In this study of reproductive-age women with SLE, African American and Asian women had lower odds of contraception dispensing and African American women had lower odds of HEC use. Further study is needed to understand the factors driving these racial disparities among this population.

Disparities in Childhood-Onset Lupus.

Disparities in prevalence, disease severity, physical and mental morbidity, and mortality exist in childhood-onset systemic lupus (cSLE) that lead to worse outcomes in children with systemic lupus erythematosus from socially disadvantaged backgrounds. Important gaps exist in knowledge regarding many individual race/ethnicities across the globe, the interaction between race/ethnicity and poverty, and drivers for identified disparities. Large cSLE registries will facilitate investigating disparities in groups of patients that have yet to be identified. Social-ecological models can inform approaches to investigate, monitor, and address disparities in cSLE.

Increasing Ancestral Diversity in Lupus Trials: Ways Forward.

Significant disparities exist in systemic lupus erythematosus (SLE) regarding prevalence, disease severity, and mortality, with race/ethnic minorities being disproportionately affected in the United States. This review highlights that despite these disparities, race/ethnic minority underrepresentation remains an issue within SLE research. Decreased race/ethnic minority involvement in SLE research has real-world implications, including less understanding of the disease and less applicability of approved therapies among diverse groups of patients. Members of the SLE research community have an obligation to narrow this gap to ensure that future advances within the field are derived from and benefit a more representative group of patients.

Racial and Ethnic Differences in the Prevalence and Time to Onset of Manifestations of Systemic Lupus Erythematosus: The California Lupus Surveillance Project.

OBJECTIVE: The California Lupus Surveillance Project (CLSP) is a population-based registry of individuals with systemic lupus erythematosus (SLE) residing in San Francisco County, California from 2007 to 2009, with a special focus on Asian/Pacific Islander and Hispanic patients. We used retrospective CLSP data to analyze racial and ethnic differences in lupus manifestations and in the timing and risk of developing severe manifestations. METHODS: A total of 724 patients with SLE were retrospectively identified. Prevalence ratios (PRs) of SLE manifestations were calculated using Poisson regression models stratified by race/ethnicity and adjusted for sex, age at SLE diagnosis, and disease duration. We studied onset of severe SLE manifestations after SLE diagnosis using Kaplan-Meier methods to examine time-to-event and Cox proportional hazards regression models to estimate hazard ratios (HRs). White patients were the referent group in all analyses. RESULTS: African Americans, Asian/Pacific Islanders, and Hispanic patients had increased prevalence of renal manifestations (PR 1.74 [95% confidence interval (95% CI) 1.40-2.16], PR 1.68 [95% CI 1.38-2.05], and PR 1.35 [95% CI 1.05-1.74], respectively). Furthermore, African Americans had increased prevalence of neurologic manifestations (PR 1.49 [95% CI 1.12-1.98]), and both African Americans (PR 1.09 [95% CI 1.04-1.15]) and Asian/Pacific Islanders (PR 1.07 [95% CI 1.01-1.13]) had increased prevalence of hematologic manifestations. African Americans, Asian/Pacific Islanders, and Hispanic patients, respectively, had higher risk of developing lupus nephritis (HR 2.4 [95% CI 1.6-3.8], HR 4.3 [95% CI 2.9-6.4], and HR 2.3 [95% CI 1.4-3.8]) and thrombocytopenia (HR 2.3 [95% CI 1.1-4.4], HR 2.3 [95% CI 1.3-4.2], and HR 2.2 [95% CI 1.1-4.7]). Asian/Pacific Islander and Hispanic patients had higher risk of developing antiphospholipid syndrome (HR 2.5 [95% CI 1.4-4.4] and HR 2.6 [95% CI 1.3-5.1], respectively). CONCLUSION: This is the first epidemiologic study comparing lupus manifestations among 4 major racial and ethnic groups. We found substantial differences in the prevalence of several clinical SLE manifestations among racial/ethnic groups and discovered that African Americans, Asian/Pacific Islanders, and Hispanic patients are at increased risk of developing several severe manifestations following a diagnosis of SLE.

Racial Disparities in Mortality Associated with Systemic Lupus Erythematosus - Fulton and DeKalb Counties, Georgia, 2002-2016.

Systemic lupus erythematosus (SLE) is a chronic, systemic autoimmune disease with often nonspecific symptoms that can lead to a delay in diagnosis. The disease disproportionately affects women and minorities. Blacks with SLE also have more severe disease and develop it at an earlier age (1). Despite an increase in the 5-year survival rate from 50% in 1955 to approximately 90% in the 2000s, attributed largely to advances in management of SLE (2), premature mortality among SLE patients persists, often as a result of disease severity, infections, and cardiovascular disease. Because existing SLE mortality estimates based on death certificate data are known to underestimate SLE deaths (3), SLE mortality was analyzed using 2002-2004 data from the population-based Georgia Lupus Registry (1). Incident and prevalent SLE cases matched to the National Death Index through 2016 identified 97 and 401 deaths, respectively. Standardized mortality ratios adjusted for age group, sex, and race were two to three times higher among persons with SLE relative to expected deaths in the general population. Blacks had significantly higher cumulative mortality than did whites, and blacks with both incident and prevalent cases were significantly younger at death (mean age 51.8 and 52.3 years, respectively) than were whites (mean age 64.4 and 65.0 years, respectively). Whites had lower mortality after diagnosis than did blacks; among incident cases, mortality among whites did not occur until 5 years after SLE diagnosis, whereas blacks had significantly and persistently higher mortality from the time of diagnosis. There were no significant differences by sex. Current CDC-supported efforts encourage early detection, diagnosis, and treatment, and enhanced self-management skills to mitigate racial disparities and improve outcomes overall among persons with SLE.

Racial/ethnic variation in stroke rates and risks among patients with systemic lupus erythematosus.

OBJECTIVE: Systemic lupus erythematosus (SLE), which is associated with increased stroke risk, is more prevalent and often more severe among Blacks, Asians, and Hispanics than Whites. We examined racial/ethnic variation in stroke rates and risks, overall and by hemorrhagic versus ischemic subtype, among SLE patients. METHODS: Within Medicaid (2000-2010), we identified patients aged 18-65 with SLE (≥ 3 ICD-9 710.0 codes, ≥ 30days apart) and ≥12 months of continuous enrollment. Subjects were followed from index date to first stroke event, death, disenrollment, or end of follow-up. Race/ethnicity-specific annual event rates were calculated for stroke overall and by subtypes (hemorrhagic vs. ischemic). We used Cox proportional hazard models to estimate hazard ratios (HR) of stroke by race/ethnicity, adjusting for comorbidities and the competing risk of death. RESULTS: Of 65,788 SLE patients, 93.1% were female. Racial/ethnic breakdown was 42% Black, 38% White, 16% Hispanic, 3% Asian, and 1% American Indian/Alaska Natives. Mean follow-up was 3.7 ± 3.0years. After multivariable adjustment, Blacks were at increased risk of overall stroke (HR 1.34 [95%CI 1.18-1.53), hemorrhagic stroke (HR 1.42 [1.00-2.01]), and ischemic stroke (HR 1.33 [1.15-1.52]) compared to Whites. Hispanics were at increased risk of overall stroke (HR 1.25 [1.06-1.47)] and hemorrhagic stroke (HR 1.79 [95% CI 1.22-2.61]), but not ischemic stroke, compared to Whites. CONCLUSION: Among SLE patients enrolled in Medicaid, we observed elevated stroke risk (overall and by subtype) among Blacks and Hispanics compared to Whites, suggesting the importance of early recognition and screening for stroke risk factors among Blacks and Hispanics.

Area-Level Predictors of Medication Nonadherence Among US Medicaid Beneficiaries With Lupus: A Multilevel Study.

OBJECTIVE: Adherence to hydroxychloroquine (HCQ) treatment in patients with systemic lupus erythematous (SLE) is suboptimal. Although individual-level factors, including younger age and non-white race/ethnicity, have been implicated, contextual factors have not been explored. The aim of this study was to investigate the effect of contextual factors, including racial composition, socioeconomic status, and the concentration of health care resources, on adherence to HCQ among SLE patients enrolled in Medicaid. METHODS: We identified SLE patients from 28 states in the US who enrolled in Medicaid (2000-2010) and in whom HCQ treatment was newly initiated (no use for ≥6 months). We required 12 months of continuous enrollment with complete drug dispensing data and measured adherence using the proportion of days covered (PDC). We identified individual-level variables from Medicaid, zip code-level, county-level and state-level sociodemographic variables from the American Community Survey, and health resources from Area Health Resources Files. We used 4-level hierarchical multivariable logistic regression models to examine the odds ratios (ORs) and 95% credible intervals (95% CrIs) of adherence (PDC ≥80%) versus nonadherence. RESULTS: Among 10,268 patients with SLE in whom HCQ treatment was initiated, 15% were adherent to treatment. After we adjusted for individual-level characteristics, we observed lower odds of adherence among patients living in zip code areas with a higher percentage of black individuals (highest tertile OR 0.81 [95% CrI 0.69-0.96] versus lowest tertile). This association persisted after controlling for area-level educational attainment, percent below federal poverty level (FPL), urbanicity, and health care resources. We did not observe statistically significant associations with zip code-level percent Hispanic, percent white, education, or percent below FPL. The odds of adherence were higher in counties with more hospitals (OR 1.30 [95% CrI 1.07-1.58]). CONCLUSION: Among Medicaid beneficiaries with SLE, we observed significant effects of racial composition and hospital concentration on HCQ adherence. Interventions that acknowledge and address contextual factors should be considered in order to reduce high rates of nonadherence in vulnerable populations.

Work disability in Argentinian patients with systemic lupus erythematosus is prevalent and it is due to ethnic, socioeconomic and disease-related factors.

OBJECTIVE: To study the prevalence and the associated factors of work disability (WD) in systemic lupus erythematosus (SLE) patients. METHODS: A sample of 419 SLE patients from an observational cross-sectional multicenter study was included. Sociodemographic features, disease characteristics, comorbidities, quality of life, unhealthy behaviors, and work-related factors were measured in a standardized interview. Work disability was defined by patient self-report of not being able to work because of SLE. To identify variables associated with work disability, two different multivariate regression models using a stepwise backward method were performed. RESULTS: Prevalence of WD due to SLE was 24.3%. Eighty-nine percent were female and 51% were Caucasians. Mean disease duration was 8.9 ± 7.2 years, and median System Lupus International Collaborating Clinics/American College of Rheumatology damage index SLICC-SDI was 1.5 (range 0-17). In stepwise multivariate logistic regression, living below the poverty line (odds ratio [OR] = 4.65), less than 12 years of education (OR = 2.84), Mestizo ethnicity (OR = 1.94) and SLICC-SDI (OR = 1.25) were predictors of WD. A second model was performed including patient-derived measures; in this model sedentary lifestyle (OR = 2.69) and lower emotional health domain score of the Lupus Quality of Life (LupusQoL) questionnaire (OR = 1.03) were found to be associated to WD and a higher score in LupusQoL physical health domain (OR = 0.93) was protective. CONCLUSION: The prevalence of WD in Argentinian SLE patients was 24.3%. WD was associated with ethnic (Mestizo), socioeconomic (poverty) and disease-related factors. Patient-related outcomes such us sedentary lifestyle and poor emotional quality of life were also associated with WD.

Contribution of Socioeconomic Status to Racial/Ethnic Disparities in Adverse Pregnancy Outcomes Among Women With Systemic Lupus Erythematosus.

OBJECTIVE: We examined rates of adverse pregnancy outcomes (APO) by race/ethnicity among women with systemic lupus erythematosus (SLE), with and without antiphospholipid antibodies (aPL), and whether socioeconomic status (SES) accounted for differences. METHODS: Data were from the PROMISSE (Predictors of Pregnancy Outcome: Biomarkers in Antiphospholipid Antibody Syndrome and Systemic Lupus Erythematosus) study, a multicenter study that enrolled 346 patients with SLE and 62 patients with SLE and aPL (50% white, 20% African American, 17% Hispanic, 12% Asian/Pacific Islander). Measures of SES were educational attainment, median community income, and community education. Logistic regression analyses were conducted to determine odds of APO for each racial/ethnic group, controlling first for age and clinical variables, and then for SES. RESULTS: The frequency of APO in white women with SLE, with and without aPL, was 29% and 11%, respectively. For African American and Hispanic women it was approximately 2-fold greater. In African American women with SLE alone, adjustment for clinical variables attenuated the odds ratio (OR) from 2.7 (95% confidence interval [95% CI] 1.3-5.5) to 2.3 (95% CI 1.1-5.1), and after additional adjustment for SES, there were no longer significant differences in APO compared to whites. In contrast, in SLE patients with aPL, whites, African Americans, and Hispanics had markedly higher risks of APO compared to white SLE patients without aPL (OR 3.5 [95% CI 1.4-7.7], OR 12.4 [95% CI 1.9-79.8], and OR 10.4 [95% CI 2.5-42.4], respectively), which were not accounted for by clinical or SES covariates. CONCLUSION: This finding suggests that for African American women with SLE without aPL, SES factors are key contributors to disparities in APO, despite monthly care from experts, whereas other factors contribute to disparities in SLE with aPL.

Race/Ethnicity and Cardiovascular Events Among Patients With Systemic Lupus Erythematosus.

OBJECTIVE: Systemic lupus erythematosus (SLE) is more prevalent and results in more severe outcomes among blacks, Asians, and Hispanics than among whites. Cardiovascular disease (CVD) is the leading cause of death among SLE patients. We undertook this study to examine racial/ethnic variations in risk of CVD events among SLE patients. METHODS: Within the Medicaid Analytic eXtract from 2000 to 2010, we identified patients ages 18-65 years with SLE (≥3 International Classification of Diseases, Ninth Revision 710.0 codes, ≥30 days apart) and with ≥12 months of continuous enrollment. Subjects were followed up from the index date to the first CVD event (myocardial infarction [MI] or stroke), death, disenrollment, loss to follow-up, or end of follow-up period. Race/ethnicity-specific annual CVD event rates were calculated. Cox regression models estimated hazard ratios (HRs) with 95% confidence intervals (95% CIs), accounting for competing risk of death and adjusting for baseline demographics and comorbidities. RESULTS: Of 65,788 SLE patients, 93.1% were women and ∼42% were black, 38% were white, 16% were Hispanic, 3% were Asian, and 1% were American Indian/Alaska Native. Mean ± SD follow-up was 3.8 ± 3.1 years. CVD event rates were highest among blacks (incidence rate [IR] 10.57 [95% CI 9.96-11.22]) and lowest among Asians (IR 6.63 [95% CI 4.97-8.85]). After multivariable adjustment, risk of CVD events was increased among blacks (HR 1.14 [95% CI 1.03-1.26]) compared to whites. Hispanics and Asians had a lower risk of MI (HR 0.61 [95% CI 0.48-0.77] and HR 0.57 [95% CI 0.34-0.96], respectively), while blacks and Hispanics had a higher risk of stroke (HR 1.31 [95% CI 1.15-1.49] and HR 1.22 [95% CI 1.03-1.44], respectively). CONCLUSION: Among SLE patients enrolled in Medicaid, the risk of MI was lower among Hispanics and Asians compared to whites, while the risk of stroke was elevated among blacks and Hispanics compared to whites.

The effect of ethnicity and genetic ancestry on the epidemiology, clinical features and outcome of systemic lupus erythematosus.

In this in-depth review, we examine the worldwide epidemiology of SLE and summarize current knowledge on the influence of race/ethnicity on clinical manifestations, disease activity, damage accumulation and outcome in SLE. Susceptibility to SLE has a strong genetic component, and trans-ancestral genetic studies have revealed a substantial commonality of shared genetic risk variants across different genetic ancestries that predispose to the development of SLE. The highest increased risk of developing SLE is observed in black individuals (incidence 5- to 9-fold increased, prevalence 2- to 3-fold increased), with an increased risk also observed in South Asians, East Asians and other non-white groups, compared with white individuals. Black, East Asian, South Asian and Hispanic individuals with SLE tend to develop more severe disease with a greater number of manifestations and accumulate damage from lupus more rapidly. Increased genetic risk burden in these populations, associated with increased autoantibody reactivity in non-white individuals with SLE, may explain the more severe lupus phenotype. Even after taking into account socio-economic factors, race/ethnicity remains a key determinant of poor outcome, such as end-stage renal failure and mortality, in SLE. Community measures to expedite diagnosis through increased awareness in at-risk racial/ethnic populations and ethnically personalized treatment algorithms may help in future to improve long-term outcomes in SLE.

Relationship between health-related quality of life, disease activity and disease damage in a prospective international multicenter cohort of childhood onset systemic lupus erythematosus patients.

Previously, we described associations between health-related quality of life (HRQOL) and disease-related factors among childhood onset systemic lupus erythematosus (cSLE) patients. Here we determined the relationship between HRQOL, disease activity and damage in a large prospective international cohort of cSLE. We compared HRQOL, disease activity and disease damage across different continents and examined the relationship between children's and parents' assessments of HRQOL. Patients with cSLE and their parents completed HRQOL measures at enrollment and ≥4 follow-up visits. Physicians assessed disease activity and damage. The multinational cohort ( n = 467) had relatively low disease activity and damage. Patient and parent HRQOL scores were significantly correlated. Asian and European patients had the highest HRQOL, while South and North American patients had lower HRQOL scores. Renal, CNS, skin and musculoskeletal systems exhibited the highest levels of damage. North and South American and Asian patients were more likely to have disease damage and activity scores above median values, compared with Europeans. Asians were more likely to use cyclophosphamide/rituximab. Female gender, high disease activity and damage, non-White ethnicity, and use of cyclophosphamide and/rituximab were related to lower HRQOL. HRQOL domain scores continue to emphasize that SLE has widespread impact on all aspects of children's and parents' lives.

Racial and Ethnic Disparities in the Pregnancies of Women With Systemic Lupus Erythematosus.

OBJECTIVE: Both systemic lupus erythematosus (SLE; lupus) and pregnancy individually have significant racial disparities, with black women experiencing higher rates of complications, yet no large studies have focused on the impact of race/ethnicity on pregnancy outcomes among women with lupus. METHODS: Using the Nationwide Inpatient Sample (NIS) for 2008-2010, pregnancy delivery discharges were identified and pregnancy outcomes were compared for women with lupus by maternal race/ethnicity. Adjusted odds ratios were used to compare pregnancy outcomes between black and white or Hispanic and white women with lupus. RESULTS: In this period, the NIS included 13,553 deliveries with lupus and 12,510,565 deliveries without lupus. Compared to white women with lupus, black and Hispanic women had higher rates of chronic hypertension, chronic renal failure, pneumonia, and acute renal failure. There was a high degree of pregnancy complication in all women with lupus, but especially in black and Hispanic women, with more than 40% cesarean-section delivery; preterm labor in 14.3% of white, 24.7% of black (odds ratio [OR] 1.97), and 20.6% of Hispanic (OR 1.56) deliveries; and preeclampsia and gestational hypertension in almost 20% of black and Hispanic pregnancies. After adjustment for predictors of pregnancy outcomes and racial differences in nonlupus pregnancy, black and Hispanic women with lupus had higher than expected rates of preeclampsia, preterm labor, and fetal growth restriction. CONCLUSION: Black and Hispanic women with lupus have disproportionately poor pregnancy outcomes. This study suggests that identifying the key causes of these differences and targeting interventions to the women of greatest need is an essential next step.

Systemic lupus erythematosus observations of travel burden: A qualitative inquiry.

AIMS: Explorations of travel impediments among patients suffering from rheumatic diseases have been very limited. Research has consistently indicated a shortage of rheumatologists, resulting in patients potentially having to travel long distances for care. The purpose of our study was to explore how systemic lupus erythematosus (SLE) patients experience travel issues differentially by race and socio-economic status. METHODS: We conducted semi-structured interviews and a brief demographic survey with 10 patients diagnosed with SLE. Interview transcripts were coded and analyzed using NVivo Analysis Software to facilitate the reporting of recurrent themes and supporting quotations, and an initial codebook was independently developed by two researchers on the study team and then verified together. RESULTS: Patients described three major areas of concern with respect to travel burden in accessing their rheumatologists: reliance on caregivers; meeting financial priorities; and pain and physical limitations. CONCLUSIONS: Our data suggest general traveling challenges interfering with medical appointment compliance for several participants and the importance of socio-economic issues when considering travel issues. This study highlights an important area with implications for adherence to medical appointments and participation in research among patients with SLE.