Objective To estimate the annual incidence rate of SLE in the USA. Methods A meta-analysis used sex/race/ethnicity-specific data spanning 2002-2009 from the Centers for Disease Control and Prevention network of four population-based state registries to estimate the incidence rates. SLE was defined as fulfilling the 1997 revised American College of Rheumatology classification criteria. Given heterogeneity across sites, a random effects model was employed. Applying sex/race/ethnicity-stratified rates, including data from the Indian Health Service registry, to the 2018 US Census population generated estimates of newly diagnosed SLE cases. Results The pooled incidence rate per 100 000 person-years was 5.1 (95% CI 4.6 to 5.6), higher in females than in males (8.7 vs 1.2), and highest among black females (15.9), followed by Asian/Pacific Islander (7.6), Hispanic (6.8) and white (5.7) females. Male incidence was highest in black males (2.4), followed by Hispanic (0.9), white (0.8) and Asian/Pacific Islander (0.4) males. The American Indian/Alaska Native population had the second highest race-specific SLE estimates for females (10.4 per 100 000) and highest for males (3.8 per 100 000). In 2018, an estimated 14 263 persons (95% CI 11 563 to 17 735) were newly diagnosed with SLE in the USA. Conclusions A network of population-based SLE registries provided estimates of SLE incidence rates and numbers diagnosed in the USA.

Objective: The study objective was to compare leukocyte telomere length (LTL) among patients with systemic lupus erythematosus (SLE) diagnosed in childhood versus adulthood. Methods: Data are from the Black Women's Experiences Living with Lupus (BeWELL) study. Multivariable linear regression analyses that examined childhood diagnosis of SLE (diagnosed before 18 years of age), age, and their interaction in relationship to LTL were conducted, adjusting for a range of demographic, socioeconomic, and health-related covariates. Results: The total analytic sample size was 415. Forty participants (9.6%) were diagnosed in childhood. There was no main effect of childhood diagnosis on LTL (b = 0.007; 95% confidence interval [CI]: −0.089 to 0.103). However, the interaction between age and childhood diagnosis was significant (b = −0.008; 95% CI: −0.016 to −0.001), indicating a steeper inverse association between age and LTL among those diagnosed in childhood compared with those diagnosed in adulthood. This interaction remained statistically significant (P = 0.024) after controlling for disease duration measured dichotomously (less than 10 years vs. 10 years or more); it was marginally significant (P = 0.083) when controlling for disease duration measured continuously. Conclusion: This cross-sectional analysis suggests that Black women with childhood-onset SLE may undergo accelerated LTL shortening compared with their adult-onset counterparts. This relationship persisted even after controlling for differences in SLE damage and disease duration. These findings inform research on immunosenescence mechanisms of SLE.

Objective While fatigue and pain are pervasive symptoms in SLE, self-efficacy can mitigate their intensity and impact on patients' daily activity. We examined the relationships of these domains and their interactions with demographics and depression in black women with SLE. Methods This is a cross-sectional analysis of data collected among 699 black women with SLE. We used validated, self-reported measures of fatigue, pain interference, symptom self-efficacy, treatment self-efficacy and depression. Linear regression analyses were conducted to examine the relationships between each outcome (fatigue and pain interference) and each predictor (symptom self-efficacy and treatment self-efficacy), and the interaction of demographics and depression. Results We found inverse associations between fatigue and each of symptom self-efficacy (slope -0.556, p<0.001) and treatment self-efficacy (slope -0.282, p<0.001), as well as between pain interference and each of symptom self-efficacy (slope -0.394, p<0.001) and treatment self-efficacy (slope -0.152, p<0.001). After adjusting for confounders, symptom self-efficacy remained significantly associated with each outcome (adjusted slope -0.241 (p<0.001) and -0.103 (p=0.008) for fatigue and pain, respectively). The amount of decrease in fatigue and pain interference differed by depression severity (p<0.05 for the interaction of symptom self-efficacy and depression). The difference in fatigue by depression widened as symptom self-efficacy increased; the adjusted fatigue scores for moderate/severe depression compared with no depression were 6.8 and 8.7 points higher at mean and high symptom self-efficacy, respectively (p<0.001). Age and education significantly changed the relationship between outcomes and self-efficacy. Conclusions Symptom self-efficacy and treatment self-efficacy were inversely related to fatigue and pain interference in black women with SLE. Depression disproportionately increased the intensity of these outcomes. While older women with low symptom self-efficacy reported disproportionately higher pain interference, those with higher education and mean or high levels of symptom self-efficacy reported lower pain interference. These findings may help predict who might benefit most from self-efficacy-enhancing interventions.

Background/Objective The Latin American population living with lupus lacks reliable and culturally competent health education resources. We describe a Spanish and Portuguese online program to educate Latin American people about lupus. Methods An extensive network of Latin American stakeholders participated in the program design, implementation, dissemination, and evaluation. Patients and rheumatologists selected core topics. Rheumatologists prepared the content using evidence-based data. Adaptations were conducted to meet the audience's health literacy and cultural values. Social media was used to post audiovisual resources and facilitate users' interactions with peers and educators, and a Web site was created to offer in-depth knowledge. Results The most massive outreach was through Facebook, with more than 20 million people reached and 80,000 followers at 3 months, between the Spanish and Portuguese pages. Nearly 90% of followers were from Latin America. A high engagement and positive responses to a satisfaction survey indicate that Facebook users valued these resources. The Spanish and Portuguese Web sites accumulated more than 62,000 page views, and 71.7% of viewers were from Latin American. Conclusions The engagement of patients and stakeholders is critical to provide and disseminate reliable lupus education. Social media can be used to educate and facilitate interactions between people affected by lupus and qualified health care professionals. Social media-based health education has extensive and scalable outreach but is more taxing for the professional team than the Web site. However, the Web site is less likely to be used as a primary education source by Latin American people because they value social interactions when seeking lupus information.

Objective. To assess the reliability and criterion and construct validity of the self-administered Brief Index of Lupus Damage (SA-BILD), a patient-reported measure of organ damage in systemic lupus erythematosus (SLE). Methods. The validity of the SA-BILD was assessed using data from the Georgians Organized Against Lupus (GOAL) survey. GOAL is a longitudinal cohort of SLE patients predominantly derived from the Georgia Lupus Registry, a population-based registry established in Atlanta, Georgia. In total, 711 participants with documented SLE completed the SA-BILD. To test reliability, the SA-BILD was readministered to 32 patients. Criterion validity was examined in 150 respondents for whom the Systemic Lupus International Collaborating Clinics/American College of Rheumatology Damage Index (SDI) was also completed. Construct validity was assessed among 711 GOAL participants by dividing the SA-BILD scores into quartiles and examining the association with demographics, health status, and health care utilization. Results. The test-retest correlation score was 0.93 (P < 0.0001), the item-by-item agreement with the SDI was >80% for most SA-BILD items, and the Spearman's rho correlation coefficient for the SDI and SA-BILD was moderately high (ρ = 0.59, P < 0.0001). SA-BILD scores showed significant associations in the expected directions with age, disease duration, disease activity, overall health, comorbidity index, and physician visits. Conclusion. The SA-BILD was reliable and had very good or good criterion validity compared with the SDI when tested in a predominantly African American cohort of US SLE patients. Associations of SA-BILD scores with sociodemographics and health status were consistent with previous studies. These findings support the use of the SA-BILD as a valid measure of patient-reported damage in SLE.

Objective: To describe end-stage renal disease (ESRD) quality of care (receipt of pre-ESRD nephrology care, access to kidney transplantation, and placement of permanent vascular access for dialysis) in US patients with ESRD due to lupus nephritis (LN-ESRD) and to examine whether quality measures differ by patient sociodemographic characteristics or US region. Methods: National surveillance data on patients in the US in whom treatment for LN-ESRD was initiated between July 2005 and September 2011 (n = 6,594) were analyzed. Odds ratios (ORs) and hazard ratios (HRs) with 95% confidence intervals (95% CIs) were determined for each quality measure, according to sociodemographic factors and US region. Results: Overall, 71% of the patients received nephrology care prior to ESRD. Black and Hispanic patients were less likely than white patients to receive pre-ESRD care (OR 0.73 [95% CI 0.63-0.85] and OR 0.73 [95% CI 0.60-0.88], respectively) and to be placed on the kidney transplant waitlist within the first year after the start of ESRD (HR 0.78 [95% CI 0.68-0.91] and HR 0.82 [95% CI 0.68-0.98], respectively). Those with Medicaid (HR 0.51 [95% CI 0.44-0.58]) or no insurance (HR 0.36 [95% CI 0.29-0.44]) were less likely than those with private insurance to be placed on the waitlist. Only 24% had a permanent vascular access, and placement was even less likely among the uninsured (OR 0.62 [95% CI 0.49-0.79]). ESRD quality-of-care measures varied 2-3-fold across regions of the US, with patients in the Northeast and Northwest generally having higher probabilities of adequate care. Conclusion: LN-ESRD patients have suboptimal ESRD care, particularly with regard to placement of dialysis vascular access. Minority race/ethnicity and lack of private insurance are associated with inadequate ESRD care. Further studies are warranted to examine multilevel barriers to, and develop targeted interventions to improve delivery of, care among patients with LN-ESRD.

Objective: To estimate and identify factors associated with incidence of all-cause end-stage renal disease (ESRD) among newly diagnosed systemic lupus erythematosus (SLE) patients. Methods: Data from a national registry of treated ESRD were linked to data from a lupus registry of SLE patients who were newly diagnosed and living in Atlanta, Georgia, in 2002-2004 (median follow-up, 7.8 years). Cumulative incidence and incidence rates (ESRD treatment initiations per 1000 patient-years) were calculated, and age- and race-adjusted Poisson models were used to calculate incidence rate ratios (IRRs). Results: Among 344 newly diagnosed SLE patients, 29 initiated ESRD over 2603.8 years of follow-up. Incidence rates were 13.8 (95% CI, 9.4-20.3) and 3.3 (95% CI, 0.8-13.0) per 1000 patient-years among black and white patients, respectively; corresponding 5-year cumulative incidence was 6.4% and 2.5%. Lupus nephritis documented prior to 2005, which occurred in 80% of those who progressed to ESRD, was the strongest risk factor for incident ESRD (IRR=6.7, 95% CI, 2.7-16.8; incidence rate=27.6 per 1000 patient-years). Results suggested that patients who were black vs. white (IRR=3.9, 95% CI, 0.9-16.4) or <18 years (vs. ≥30 years) at diagnosis (IRR=2.1, 95% CI, 0.9-5.3) may be more likely to progress to ESRD, but incidence did not differ by sex or other characteristics. Conclusion: Incidence of all-cause ESRD among patients with a recent diagnosis of SLE is high in Georgia. Interventions to decrease ESRD incidence among newly diagnosed SLE patients should target young and black patients as well as patients with lupus nephritis.

Objective To examine whether pandemic-related issues were associated with physical functioning, community mobility and cognition among individuals with SLE. Methods Participants were recruited (6 October 2020-11 November 2021) for this cross-sectional study from a population-based cohort of individuals with validated SLE in metropolitan Atlanta, as part of an ongoing ancillary study. Pandemic-related issues (concern about the pandemic (very vs somewhat/not at all concerned); changes in physical activity and sleep (less vs more/same); difficulty obtaining food and medications and accessing routine care (any vs none)) were self-reported. Self-reported physical functioning and episodic and working memory performance were reported as t-scores (such that a score of 50=population mean and a 10-point difference=1 SD) and community mobility scores ranged from 0 to 120, with higher scores representing better functioning for all domains. Differences in scores were assessed via t-tests and age-adjusted, sex-adjusted and race-adjusted linear regression. Results Among 245 participants (mean age, 46 years; 95% female, 77% black), physical functioning t-scores (mean=44) were consistently lower (by 3-5 points) for those who reported concern about the pandemic, less physical activity and sleep, difficulty obtaining food and medications, and accessing routine care. Similarly, community mobility scores (mean=48) were lower (by 10-20 points) for these individuals. There were no substantial differences in episodic memory and working memory t-scores (mean=50 and 47, respectively) by pandemic-related issues. Conclusion We found that physical functioning and community mobility, but not cognition, were lower among those who reported more concern about the pandemic or greater disruptions to health routines. Future studies should explore interventions among these vulnerable individuals with SLE, who already disproportionately suffer from functional impairment, to maintain functioning and prevent adverse outcomes during times of crisis.

Objective: Epidemiologic data on systemic lupus erythematosus (SLE) are limited, particularly for racial/ethnic subpopulations in the US. This meta-analysis leveraged data from the Centers for Disease Control and Prevention (CDC) National Lupus Registry network of population-based SLE registries to estimate the overall prevalence of SLE in the US. Methods: The CDC National Lupus Registry network includes 4 registries from unique states and a fifth registry from the Indian Health Service. All registries defined cases of SLE according to the American College of Rheumatology (ACR) 1997 revised classification criteria for SLE. Case findings spanned either 2002–2004 or 2007–2009. Given the heterogeneity across sites, a random-effects model was used to calculate the pooled prevalence of SLE. An estimate of the number of SLE cases in the US was generated by applying sex/race-stratified estimates to the 2018 US Census population. Results: In total, 5,417 cases were identified as fulfilling the ACR SLE classification criteria. The pooled prevalence of SLE from the 4 state-specific registries was 72.8 per 100,000 person-years (95% confidence interval [95% CI] 65.3–81.0). The prevalence estimate was 9 times higher among females than among males (128.7 versus 14.6 per 100,000), and highest among Black females (230.9 per 100,000), followed by Hispanic females (120.7 per 100,000), White females (84.7 per 100,000), and Asian/Pacific Islander females (84.4 per 100,000). Among males, the prevalence of SLE was highest in Black males (26.7 per 100,000), followed by Hispanic males (18.0 per 100,000), Asian/Pacific Islander males (11.2 per 100,000), and White males (8.9 per 100,000). The American Indian/Alaska Native population had the highest race-specific SLE estimates, both among females (270.6 per 100,000) and among males (53.8 per 100,000). In 2018, an estimated 204,295 individuals (95% CI 160,902–261,725) in the US fulfilled the ACR classification criteria for SLE. Conclusion: A coordinated network of population-based SLE registries provides more accurate estimates of the prevalence of SLE and the numbers of individuals affected with SLE in the US in 2018.

Depression is a common comorbidity among Black women with systemic lupus erythematosus (SLE), an understudied autoimmune disease characterized by major racial and gender inequities. Research is needed that examines how area-level factors influence risk of depression in this population. Latent profile analysis revealed four neighborhood typologies among metropolitan Atlanta, Georgia census tracts that participants (n=438) in the Black Women's Experiences Living with Lupus (BeWELL) Study were living in: Integrated/High-SES, Moderately Segregated/Mid-SES, Highly Segregated/Mid-SES, and Highly Segregated/Low-SES. Structural equation models indicated that highly segregated census tracts were associated with the greatest levels of depression via increased subjective assessments of neighborhood disorder. Policies that invest in segregated areas and address physical and social aspects of the environment that contribute to neighborhood disorder may promote mental health among Black women with SLE.