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Disparities in SLE rates and outcomes have been attributed to genetic and hormonal factors, cigarette smoking and environmental pollutants. However, a growing body of research indicates that social determinants of health (SDH) also have substantial impact on the disparities that characterize SLE. According to the World Health Organization, SDH are defined as ‘the conditions in which people are born, grow, work, live, and age’, account for 30–55% of health outcomes, and adversely impact health outcomes among those of low socioeconomic status and stigmatized racial/ethnic groups. We reviewed the impact of key SDH on SLE presentation, management and outcomes, including income, education, neighbourhood factors, healthcare access, discrimination and social support. We found that adverse SDH conditions may lead to more severe SLE with increased morbidity and mortality, and that SDH affect SLE management by dictating the most feasible monitoring and treatment plan for each individual patient based on his or her specific life circumstances (for example, based on health insurance status, distance to nearest provider and/or drug affordability). SDH also have a significant impact on SLE outcomes, with worse disease and psychosocial outcomes associated with lower income level, lower educational attainment, disadvantaged neighbourhoods, lack of health insurance or public health insurance in the USA, travel burden to nearest provider, anti-Black racism and lower social support. Future efforts to improve the management and outcomes of patients with SLE must combat the societal, economic and political forces that perpetuate these inequities.

Objective The Chronic Disease Self-Management Program (CDSMP) is designed to enhance patients self-efficacy and skills to manage their chronic illness. There is compelling evidence for the benefits of the CDSMP among patients with systemic lupus erythematosus (SLE); however, little is known about predictors of participation among Black women with SLE. We examined factors associated with CDSMP initiation and completion in this population. Methods We studied 228 Black women with SLE who consented to attend a CDSMP workshop. We used logistic regression to calculate unadjusted and adjusted ORs for being a CDSMP initiator (a participant registered into the CDSMP who attended at least one of the first two weekly classes) and a CDSMP completer (a participant who completed >4 of 6 weekly classes). Results Majority of partipants were CDSMP initiators (74%, n=168). Of them, 126 (75%) were CDSMP completers. Older age [aOR: 1.03, 95% CI:1.00-1.06] and unemployment/disability [aOR: 2.05, 95% CI: 1.05-4.14] increased the odds of being a CDSMP initiator. The odds of initiating CDSMP decreased by 22% for each additional child in the household [OR: 0.78, 95% CI:0.62-0.98] but this association became non-significant in the adjusted model [aOR: 0.89, 95% CI:0.68-1.18]. The only factor that differed significantly between CDSMP completers and non-completers was age, with 4% higher odds of being a completer for each additional year of age (aOR: 1.04, 95% CI: 1.00-1.07). Conclusion Our findings suggest that young Black women with SLE face barriers to attend and complete in-person CDSMP workshops, possibly in relation to work and childcare demands.

The Systemic Lupus International Collaborating Clinics (SLICC), American College of Rheumatology (ACR), and the Lupus Foundation of America are developing a revised systemic lupus erythematosus (SLE) damage index (the SLICC/ACR Damage Index [SDI]). Shifts in the concept of damage in SLE have occurred with new insights into disease manifestations, diagnostics, and therapy. We evaluated contemporary constructs in SLE damage to inform development of the revised SDI.We conducted a 3-part qualitative study of international SLE experts. Facilitated small groups evaluated the construct underlying the concept of damage in SLE. A consensus meeting using nominal group technique was conducted to achieve agreement on aspects of the conceptual framework and scope of the revised damage index. The framework was finally reviewed and agreed upon by the entire group.Fifty participants from 13 countries were included. The 8 thematic clusters underlying the construct of SLE damage were purpose, items, weighting, reversibility, impact, time frame, attribution, and perspective. The revised SDI will be a discriminative index to measure morbidity in SLE, independent of activity or impact on the patient, and should be related to mortality. The SDI is primarily intended for research purposes and should take a life-course approach. Damage can occur before a diagnosis of SLE but should be attributable to SLE. Damage to an organ is irreversible, but the functional consequences on that organ may improve over time through physiological adaptation or treatment.We identified shifts in the paradigm of SLE damage and developed a unifying conceptual framework. These data form the groundwork for the next phases of SDI development.

Objective Patient-provider discussions about functioning are often outside the scope of usual care for systemic lupus erythematosus (SLE), and tools to facilitate such discussions are lacking. We assessed the comprehension, utility, and acceptability of a novel, individualized functioning report, the purpose of which is to facilitate patient-provider communication about functioning, in a predominantly Black SLE patient population. Methods Individualized reports (including sections with pictorial representations of participants' measured activities of daily living, falls, physical performance, perceived physical functioning, and community mobility from a previous pilot study visit) and surveys were emailed or mailed to 59 SLE patients. Ease of interpretation was dichotomized ("very easy" vs. all other responses). Utility and acceptability were assessed by items relating to usefulness for care planning and comfort with discussing the report. Results Among 47 (79.7%) SLE patients who completed the survey (78.7% Black, 91.5% female, mean age=49.6), reported ease of interpretation ranged from 70.2% to 85.1% across the report sections. Ease of interpretation was lower among those who were older, Black, and female and who had lower cognitive scores (P>0.05 for all). Most reported that physical functioning domains of the report were useful for treatment or other care planning (70.2-80.5%) and that they felt comfortable discussing the report with a healthcare provider (93.2-100%). Conclusion We found that a novel functioning report for SLE patients was associated with high comprehension, utility, and acceptability. Future studies can help determine how an individualized functioning report could improve patient-provider communication in the clinic setting.

Systemic lupus erythematosus (SLE) is a complex chronic disease associated with reduced cognitive functioning. Patients with SLE report cognitive symptoms, but cognitive assessment is not routine in SLE and little is known about day-to-day cognitive problems and their effect on disease management. As part of a pilot exploring the use of a cognitive functioning report prototype for shared decision-making in clinical encounters (the Approaches to Positive Patient-Centered Experiences of Aging in Lupus [APPEAL] Study), we investigated the relevance of cognitive assessments performed using the National Institutes of Health (NIH) Toolbox among patients with SLE.We conducted 4 focus groups, 2 with SLE patients (n = 18) and 2 with lupus providers (physicians and nurses; n = 9), addressing cognitive issues and interest in communicating about cognition. We compared how NIH Toolbox cognitive domains (episodic memory, working memory, processing speed, attention and inhibitory control, cognitive flexibility) matched with patient- and provider-identified cognitive problems and needs.Patients identified all NIH domains with rich experiential examples; providers identified fewer domains and offered less detail. An unanticipated additional domain was prospective memory (i.e., problems with remembering future actions). Use of technologic aids (e.g., smart phone alerts) was mentioned by some patients, but not providers, and represent a potential opportunity for medical care. All participants expressed interest in discussing cognition in clinic.Cognitive assessment using the NIH Cognitive Toolbox is relevant to this population, with the possible addition of a prospective memory assessment. Cognitive problems and indications of communication gaps suggest the appropriateness of more clinical communication about cognition in the SLE population.

Non-white people are more likely to develop systemic lupus erythematosus (SLE), yet are underrepresented in SLE clinical trials. The efficacy and safety of drugs may be influenced by ancestry, and ancestrally diverse study populations are necessary to optimize treatments across the full spectrum of patients. However, barriers to entry into clinical trials are amplified in non-white populations. To address these issues, a conference was held in Bethesda, Maryland from October 15th -16th , 2019 entitled "Increasing Ancestral Diversity in Systemic Lupus Erythematosus Clinical Studies: Overcoming the Barriers." Participants included people with lupus, lupus physicians, lupus clinical trialists, treatment developers from biotechnology, social scientists, patient advocacy groups, and United States government representatives (the Office of Minority Health, Centers for Disease Control and Prevention, National Institutes of Health, and the Food and Drug Administration). For all of these groups, the organizers purposefully included people of non-white ancestry. Decreased participation of non-white SLE patients in clinical research was evaluated through historical, societal, experiential, and pragmatic perspectives, and several interventional programs to increase non-white patient participation in SLE and non-SLE research were described and discussed. The presentations and discussions highlighted the need for changes at the societal, institutional, research team, referring physician, and patient education levels to achieve equitable ancestral representation in SLE clinical studies.

There are substantial disparities in clinical trial participation, which is problematic in diseases such as lupus that disproportionately affect racial/ethnic minority populations. We examined the effectiveness of an online educational course aiming to train medical providers to refer Black and Latino patients to lupus clinical trials (LCTs).The American College of Rheumatology's Materials to Increase Minority Involvement in Clinical Trials (MIMICT) study uses an online, randomized, two-group, pretest/posttest design with medical and nursing providers of multiple specialties. We exposed intervention group participants to an education course, while the control group participants received no intervention. Controlling for the effects of participant characteristics, including specialty, and professional experience with lupus, we modeled relationships among exposure to the education course and changes in knowledge, attitudes, self-efficacy, and intentions to refer Black and Latino patients to LCTs. We also examined education course satisfaction.Compared to the control group, the intervention group had significantly higher posttest scores for knowledge, self-efficacy, and intentions to refer Black and Latino patients to LCTs. Both medical and nursing trained intervention group participants had significantly higher mean posttest scores for knowledge and intentions to refer compared to the medical and nursing trained control group participants. Attitude was insignificant in analysis. The online education course, which received a favorable summary score, indicated that satisfaction and intentions to refer were strongly and positively correlated.The MIMICT education course is an effective method to educate medical providers about LCTs and improve their intentions to refer Black and Latino patients.

ObjectivesTo evaluate systemic lupus erythematosus (SLE) flares following hydroxychloroquine (HCQ) reduction or discontinuation versus HCQ maintenance.MethodsWe analysed prospective data from the Systemic Lupus International Collaborating Clinics (SLICC) cohort, enrolled from 33 sites within 15 months of SLE diagnosis and followed annually (1999–2019). We evaluated person-time contributed while on the initial HCQ dose (‘maintenance’), comparing this with person-time contributed after a first dose reduction, and after a first HCQ discontinuation. We estimated time to first flare, defined as either subsequent need for therapy augmentation, increase of ≥4 points in the SLE Disease Activity Index-2000, or hospitalisation for SLE. We estimated adjusted HRs (aHRs) with 95% CIs associated with reducing/discontinuing HCQ (vs maintenance). We also conducted separate multivariable hazard regressions in each HCQ subcohort to identify factors associated with flare.ResultsWe studied 1460 (90% female) patients initiating HCQ. aHRs for first SLE flare were 1.20 (95% CI 1.04 to 1.38) and 1.56 (95% CI 1.31 to 1.86) for the HCQ reduction and discontinuation groups, respectively, versus HCQ maintenance. Patients with low educational level were at particular risk of flaring after HCQ discontinuation (aHR 1.43, 95% CI 1.09 to 1.87). Prednisone use at time-zero was associated with over 1.5-fold increase in flare risk in all HCQ subcohorts.ConclusionsSLE flare risk was higher after HCQ taper/discontinuation versus HCQ maintenance. Decisions to maintain, reduce or stop HCQ may affect specific subgroups differently, including those on prednisone and/or with low education. Further study of special groups (eg, seniors) may be helpful.

ObjectiveTo determine predictors of change in neuropsychiatric (NP) event status in a large, prospective, international inception cohort of patients with systemic lupus erythematosus (SLE).MethodsUpon enrollment and annually thereafter, NP events attributed to SLE and non-SLE causes and physician-determined resolution were documented. Factors potentially associated with the onset and resolution of NP events were determined by time-to-event analysis using a multistate modeling structure.ResultsNP events occurred in 955 (52.3%) of 1,827 patients, and 593 (31.0%) of 1,910 unique events were attributed to SLE. For SLE-associated NP (SLE NP) events, multivariate analysis revealed a positive association with male sex (P=0.028), concurrent non-SLE NP events excluding headache (P < 0.001), active SLE (P = 0.012), and glucocorticoid use (P = 0.008). There was a negative association with Asian race (P = 0.002), postsecondary education (P = 0.001), and treatment with immunosuppressive drugs (P = 0.019) or antimalarial drugs (P = 0.056). For non-SLE NP events excluding headache, there was a positive association with concurrent SLE NP events (P < 0.001) and a negative association with African race (P = 0.012) and Asian race (P < 0.001). NP events attributed to SLE had a higher resolution rate than non-SLE NP events, with the exception of headache, which had comparable resolution rates. For SLE NP events, multivariate analysis revealed that resolution was more common in patients of Asian race (P = 0.006) and for central/focal NP events (P < 0.001). For non-SLE NP events, resolution was more common in patients of African race (P = 0.017) and less common in patients who were older at SLE diagnosis (P < 0.001).ConclusionIn a large and long-term study of the occurrence and resolution of NP events in SLE, we identified subgroups with better and worse prognosis. The course of NP events differs greatly depending on their nature and attribution.

BACKGROUND: Lupus nephritis (LN) occurs in

A retrospective cohort study in a predominantly Black population undergoing standard treatment for lupus nephritis (LN) was used to estimate the incidence of and risk factors for Complete Response (CR) according to modified ALMS and BLISS criteria by 12 months.Patients with biopsy-proven LN class III or IV ± V, urine protein to creatinine ratio (uPCR) ≥1 gm/gm and eGFR 50 ml/min/1.73 mOut of 173 patients, 86.1% were female, 77.5% were Black, and over half (59.5%) had non-commercial insurance. By 12 months, 20.6% (95% CI: 14.6-28.6%) achieved mALMS CR and 33.7% (95% CI: 26.4-42.4%) achieved mBLISS CR. Factors associated with mBLISS CR were commercial insurance (adjusted CR-Ratio=3.5; 95% CI: 1.9 to 6.7; P 0.001), albumin (adjusted CR-Ratio = 1.8 per 1 g/dL ↑ in albumin; P = 0.02), and low C4 (adjusted CR-Ratio = 2.6; P = 0.03). Cumulative incidence of ESRD at 3 years was 23.1% (95% CI: 15.7-31.3%) and 6.1% (95% CI: 2.8-11.1%) for mortality. Patients with non-commercial insurance were more likely to develop ESRD with cumulative incidence of 30.4% (95% CI: 19.6-41.9%) vs 12.7% (95% CI: 5.0-24.2%) for patients with commercial insurance (P = 0.024).In a primarily Black, uninsured LN population, despite achieving similar CR rates at 12 months, the incidence of ESRD and mortality exceeded those observed in controlled clinical trials with placebo arms.

African American women with systemic lupus erythematosus (SLE) have worse disease outcomes compared to their White counterparts. Stressors associated with race may contribute to poorer health in this population through maladaptive behavioral pathways. This study investigated relationships between stress associated with anticipating racism, smoking, and SLE disease activity. Data were from 432 African American women with SLE in the Black Women’s Experiences Living with Lupus (BeWELL) Study. Controlling for sociodemographic and health-related covariates, multivariable regression analyses revealed a significant association between anticipatory racism stress (ARS) and disease activity (p = 0.00, b = 1.13, 95% CI [0.43, 1.82]). A significant interaction between ARS and smoking also indicated that smoking exacerbated the effect of ARS on disease activity (p = 0.04, b = 1.95, CI = 0.04, 3.96). Test for evidence of smoking mediating the effect of ARS on disease activity were not statistically significant (z = 1.77, p = 0.08). Findings have implications for future SLE disparities research among African American women with SLE.

ObjectiveWhile the contribution of B-cells to SLE is well established, its role in chronic cutaneous lupus erythematosus (CCLE) remains unclear. Here, we compare B-cell and serum auto-antibody profiles between patients with systemic lupus erythematosus (SLE), CCLE, and overlap conditions.MethodsB-cells were compared by flow cytometry amongst healthy controls, CCLE without systemic lupus (CCLE+/SLE−) and SLE patients with (SLE+/CCLE+) or without CCLE (SLE+/CCLE−). Serum was analyed for autoreactive 9G4+, anti-double-stranded DNA, anti-chromatin and anti-RNA antibodies by ELISA and for anti-RNA binding proteins (RBP) by luciferase immunoprecipitation.ResultsPatients with CCLE+/SLE− share B-cell abnormalities with SLE including decreased unswitched memory and increased effector B-cells albeit at a lower level than SLE patients. Similarly, both SLE and CCLE+/SLE- patients have elevated 9G4+ IgG autoantibodies despite lower levels of anti-nucleic acid and anti-RBP antibodies in CCLE+/SLE−. CCLE+/SLE− patients could be stratified into those with SLE-like B-cell profiles and a separate group with normal B-cell profiles. The former group was more serologically active and more likely to have disseminated skin lesions.ConclusionCCLE displays perturbations in B-cell homeostasis and partial B-cell tolerance breakdown. Our study demonstrates that this entity is immunologically heterogeneous and includes a disease segment whose B-cell compartment resembles SLE and is clinically associated with enhanced serological activity and more extensive skin disease. This picture suggests that SLE-like B-cell changes in primary CCLE may help identify patients at risk for subsequent development of SLE. B-cell profiling in CCLE might also indentify candidates who would benefit from B-cell targeted therapies.

Cutaneous lupus erythematosus (CLE) is a group of heterogeneous autoimmune disorders primarily affecting the skin. Patients with these conditions are mostly young women when they become sick and often suffer from recurrent skin symptoms or longstanding changes in their physical appearance. CLE disorders lead to different levels of morbidity and can impact profoundly patients' quality of life, particularly in the psychological and social health domains. This review provides a summary of recent research investigating the psychosocial burden of living with CLE and the intersect amongst the disease characteristics, patient factors, and social determinants of health. Furthermore, this review provides insight into patient care and research needs that remain unmet to improve the quality of life of patients living with CLE.

ObjectivesA perception derived from cross-sectional studies of small systemic lupus erythematosus (SLE) cohorts is that there is a marked discrepancy between antinuclear antibody (ANA) assays, which impacts on clinicians’ approach to diagnosis and follow-up. We compared three ANA assays in a longitudinal analysis of a large international incident SLE cohort retested regularly and followed for 5 years.MethodsDemographic, clinical and serological data was from 805 SLE patients at enrolment, year 3 and 5. Two HEp-2 indirect immunofluorescence assays (IFA1, IFA2), an ANA ELISA, and SLE-related autoantibodies were performed in one laboratory. Frequencies of positivity, titres or absorbance units (AU), and IFA patterns were compared using McNemar, Wilcoxon and kappa statistics, respectively.ResultsAt enrolment, ANA positivity (≥1:80) was 96.1% by IFA1 (median titre 1:1280 (IQR 1:640–1:5120)), 98.3% by IFA2 (1:2560 (IQR 1:640–1:5120)) and 96.6% by ELISA (176.3 AU (IQR 106.4 AU–203.5 AU)). At least one ANA assay was positive for 99.6% of patients at enrolment. At year 5, ANA positivity by IFAs (IFA1 95.2%; IFA2 98.9%) remained high, while there was a decrease in ELISA positivity (91.3%, p91% agreement in ANA positivity at all time points and ≥71% agreement in IFA patterns between IFA1 and IFA2.ConclusionIn recent-onset SLE, three ANA assays demonstrated commutability with a high proportion of positivity and titres or AU. However, over 5 years follow-up, there was modest variation in ANA assay performance. In clinical situations where the SLE diagnosis is being considered, a negative test by either the ELISA or HEp-2 IFA may require reflex testing.

ObjectiveSystemic lupus erythematosus (SLE) affects Black people 2 to 3 times more frequently than non-Black people and is associated with higher morbidity and mortality. In total, 4 studies with predominantly non-Black SLE cohorts highlighted that cardiovascular disease (CVD) is no longer primarily a late complication of SLE. This study assessed the timing and predictors of incident CVD in a predominantly Black population-based SLE cohort.MethodsIncident SLE cases from the population-based Georgia Lupus Registry were validated as having a CVD event through review of medical records and matching with the Georgia Hospital Discharge Database and the National Death Index. The surveillance period for an incident CVD event spanned a 15-year period, starting from 2 years prior to SLE diagnosis.ResultsAmong 336 people with SLE, 253 (75%) were Black and 56 (17%) had an incident CVD event. The frequency of CVD events peaked in years 2 and 11 after SLE diagnosis. There was a 7-fold higher risk of incident CVD over the entire 15-year period; this risk was 19-fold higher in the first 12 years in Black people as compared to non-Black people with SLE. Black people with SLE (P< 0.001) and those with discoid rash (hazard ratio 3.2, 95% CI 1.4-7.1) had a higher risk of incident CVD events.ConclusionThe frequency of incident CVD events peaked in years 2 and 11 after SLE diagnosis. Being Black or having a discoid rash were strong predictors of an incident CVD event. Surveillance for CVD and preventive interventions, directed particularly toward Black people with recent SLE diagnoses, are needed to reduce racial disparities.