Towards an understanding of the biopsychosocial determinants of CVD in SLE: a scoping review.

OBJECTIVE: Systemic lupus erythematosus (SLE) is a chronic autoimmune condition with significant physical, mental, psychosocial and economic impacts. A main driver of SLE morbidity and mortality is cardiovascular disease (CVD). Both SLE and CVD exhibit disparities related to gender, race and other social dimensions linked with biological outcomes and health trajectories. However, the biospsychosocial dimensions of CVD in SLE populations remain poorly understood. The objective of this study was to systematically investigate the existing literature around known social factors influencing the development of CVD in SLE. METHODS: A scoping review protocol was developed according to Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping reviews guidelines. The search strategy encompassed three main concepts: SLE, CVD and social factors. Four databases were searched (PubMed, SCOPUS, PsychINFO and CINAHL). 682 studies were identified for screening. Articles were screened in two phases (title/abstract and full text) to determine whether they fulfilled the selection criteria. RESULTS: Nine studies were included after screening. All were conducted in the USA between 2009 and 2017. Six studies (67%) were cross-sectional and three (33%) were longitudinal. Most employed SLE cohorts (n=7, 78%) and two drew from healthcare databases (n=2; 22%). We identified five main themes encompassing social factors: socioeconomic status and education (n=5; 56%), race and/or ethnicity (n=7; 78%), mental health (n=2; 22%), gender (n=3; 33%) and healthcare quality and/or insurance (n=2; 22%). Overall, low income, fewer years of education, black race and/or ethnicity, depression, male gender, lack of insurance and healthcare fragmentation were all associated with CVD risk factors and outcomes in SLE. CONCLUSIONS: While several social factors contribute to CVD in SLE populations, considerable gaps remain as many social determinants remain un(der)explored. There is rich opportunity to integrate social theory, advance conceptualisations of race and/or ethnicity and gender, expand investigations of mental health and explore novel geographical contexts. In healthcare policy and practice, identified social factors should be considered for SLE populations during decision-making and treatment, and education resources should be targeted for these groups.

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.

Racial and Ethnic Composition of Populations Served by Freestanding Children's Hospitals and Disparities in Outcomes of Pediatric Lupus.

OBJECTIVE: Health disparities may be driven by hospital-level factors. We assessed whether racial and ethnic composition of populations hospitals serve explain or modify disparities in hospital outcomes of children with systemic lupus erythematosus (SLE). METHODS: In this retrospective cohort study of patients 5 to 26 years old with SLE at 47 children's hospitals in the Pediatric Health Information System (2006-2021), race and ethnicity were assessed at the patient level and hospital level (proportion of total admissions composed of Black or Hispanic patients, respectively). Outcomes included intensive care unit (ICU) admission or adverse renal outcome (end-stage renal disease, dialysis, or transplant) during follow-up. We estimated racial and ethnic disparities, adjusted or stratified by hospital racial or ethnic composition. RESULTS: Of 8,125 patients with SLE, 2,293 (28%) required ICU admission, and 698 (9%) had an adverse renal outcome. Black and non-Hispanic White disparities in ICU admission were observed only at hospitals serving higher proportions of Black patients (odds ratio [OR] 1.29, 95% confidence interval [95% CI] 1.04-1.59 vs OR 1.07, 95% CI 0.83-1.38). Larger Black and non-Hispanic White disparities in adverse renal outcomes were observed at hospitals with higher Black racial composition (OR 2.0, 95% CI 1.4-2.8 vs OR 1.7, 95% CI 1.1-2.4). Conversely, Hispanic versus non-Hispanic disparities in renal outcomes persisted after adjustment for hospital-reported Hispanic ethnic composition but were observed only at hospitals with lower proportions of Hispanic patients. CONCLUSION: Worse Black and White disparities in SLE outcomes are observed at children's hospitals serving more Black children, whereas distinct patterns are observed for Hispanic and non-Hispanic disparities. Reporting of hospital characteristics related to populations served is needed to identify modifiable drivers of hospital-level variation.

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.

Systemic lupus erythematosus in American Indian/Alaska natives: Incorporating our new understanding of the biology of trauma.

OBJECTIVE: To review the literature regarding systemic lupus erythematosus (SLE) in American Indian/Alaska Native (AI/AN) people and relate prevalence and/or disease severity to our emerging understanding of the biology of trauma and toxic stress. METHODS: We conducted a search and review of the literature using search terms "lupus and American Indians" "ACEs and disease outcome" "Biology of Adversity" "lupus and ACE scores," " lupus and childhood abuse." These search criteria were entered into Google Scholar and articles retrieved from PubMed, NBCI. This approach yielded a small numbers of papers used throughout this review. We excluded articles that were not published in a peer reviewed journals, as well as editorial commentaries. RESULTS: In the AI/AN population, SLE shows high prevalence rates and severe disease manifestations, comparable to the African American population. AI/AN populations also have high rates of childhood trauma. Toxic stress and trauma such as those catalogued in the Adverse Childhood Experiences (ACE) study have broad-reaching immunologic and epigenetic effects that are likely to be relevant to our understanding of SLE in AI/AN people. CONCLUSIONS: AI/AN people have high rates of SLE. These high rates are likely to be driven by many complex factors, not all of which are genetic. Future research is needed to establish (or refute) a causal connection between the biology of adversity and SLE in socially marginalized and historically traumatized populations.

Clinical features and genetic biomarkers associated with different phenotypes of systemic lupus erythematosus in Paraguayan patients.

Systemic lupus erythematosus (SLE) is a complex autoimmune disease characterized by a heterogeneous clinical picture that makes the diagnosis and follow-up of these patients difficult. This study aimed to identify correlations between clinical, immunological, and genetic biomarkers and clinical manifestations in SLE. A retrospective study of data from medical records and immunological and genetic studies of SLE patients in Paraguay was carried out. A descriptive analysis was performed based on the type of variable. Human leukocyte antigen (HLA) allele frequencies (DPA1, DPB1, DQA1, DQB1, and DRB1) were calculated, and univariate logistic regression analyses were performed between each of the explanatory variables and the presence or absence of each phenotype. Odds ratios, 95% confidence intervals, and p values were recorded. Associations with p<0.05 were considered statistically significant. 104 SLE patients were included: 86% were female, with a mean age of 32.80±10.36 years. An association was identified between anti-double stranded DNA (anti-dsDNA) and the presence of the renal phenotype and between anti-dsDNA and the absence of the joint and hematological phenotypes. Immunoglobulin M isotype rheumatoid factor was associated with the absence of a renal phenotype. HLA-DQB1*02:02 and HLA-DRB1*07:01 were associated with the cutaneous phenotype. An association was identified between age at disease onset over 30 years and the presence of the joint phenotype. No other associations were identified. Potential clinical, immunological, and genetic biomarkers of phenotypes have been identified in SLE Paraguayan patients.

Incidence and prevalence of systemic lupus erythematosus in New Zealand from the national administrative datasets.

OBJECTIVES: This study aims to provide updated data on the incidence and prevalence of systemic lupus erythematosus (SLE) in New Zealand and to examine the difference between ethnic groups. METHODS: We identified the SLE cases from the national administrative datasets. The date of first identification of SLE was the earliest date of a related inpatient event or the earliest date of a related outpatient event. The crude incidence and prevalence of SLE in 2010-2021 were estimated by gender, age group and ethnicity. The WHO (World Health Organization) age-standardised rate (ASR) of incidence and prevalence of SLE was calculated, after stratifying the cases by ethnicity and gender. RESULTS: The average ASR of incidence and prevalence of SLE in 2010-2021 was 2.1 and 42.1 per 100,000 people in New Zealand. The average ASR of incidence for women was 3.4 per 100,000 for women and 0.6 for men. It was highest for Pacific women (9.8), followed by Asian women (5.3) and Maori women (3.6), and was lowest for Europeans/Others (2.1). The average ASR of prevalence was 65.2 per 100,000 for women and 8.5 for men. It was highest for Pacific women (176.2), followed by Maori women (83.7) and Asian women (72.2), and was lowest for Europeans/Others (48.5). The ASR of prevalence of SLE has been increasing slightly over time: from 60.2 in 2010 to 66.1 per 100,000 in 2021 for women and from 7.6 in 2010 to 8.8 per 100,000 in 2021 for men. CONCLUSION: The incidence and prevalence of SLE in New Zealand were comparable to the rates in European countries. Pacific people had the highest incidence and prevalence of SLE, more than three times the rates for Europeans/others. The high incidence of SLE in Maori and Asian people also has implications for the future as these populations increase as a proportion to the total population.

Race, Toxic Exposures, and Environmental Health: The Contestation of Lupus among Farmworkers.

Extant research has established that low-wage workers of color are at higher risk for occupational exposures. While the medical sociology literature regarding contested illness provides insights into the dynamics surrounding workplace exposures, some environmental illnesses such as lupus have gotten scant analytical attention. This is a significant gap because women of color, who are more likely to hold these high-risk jobs, are disproportionately affected by the disease. We examine a case of pesticide exposure among Black women farmworkers in Florida. We investigate how race and occupation intersect to shape lived experiences with toxics and what role race plays in the process of contesting exposures and illness. Our data include in-depth interviews (N = 36), media coverage, and archival materials. Our findings indicate that race-related factors played an important part in shaping the farmworkers' experiences with exposures, illness, and interaction with elite actors.

Timing and Predictors of Incident Cardiovascular Disease in Systemic Lupus Erythematosus: Risk Occurs Early and Highlights Racial Disparities.

OBJECTIVE: Systemic 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. METHODS: Incident 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. RESULTS: Among 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. CONCLUSION: The 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.

Trust in the attending rheumatologist, health-related hope and medication adherence among Japanese systemic lupus erythematosus patients.

OBJECTIVE: Poor medication adherence among patients with SLE is a critical problem associated with adverse outcomes. This study examined the relationship between trust in one's physician and goal-oriented thinking, hope and medication adherence among Japanese patients with SLE who were ethnically matched to their physicians. METHODS: This cross-sectional study was conducted in the rheumatology outpatient clinics at five academic centres. Patients with SLE who were prescribed oral medications were included. The main exposures were trust in one's physician measured via the 5-item Japanese version of the Wake Forest Physician Trust Scale and the 18-item Health-related Hope Scale, with each score ranging from 0 to 100 points. Medication adherence was measured using the 12-item Medication Adherence Scale with scores ranging from 5 to 60 points. A general linear model was created after adjusting for demographics, socioeconomic status, disease activity, disease duration, basic health literacy, depression, medication variables, experiencing adverse effects and concerns regarding lupus medications. RESULTS: Altogether, 373 patients with SLE were included. The mean age of the patients was 46.4 years; among them, 329 (88.2%) were women. Both trust in one's physician (per 10-point increase: 0.86, 95% CI 0.49, 1.22) and the Health-related Hope score (per 10-point increase: 0.66, 95% CI 0.35, 0.97) were associated with better medication adherence. CONCLUSIONS: This study demonstrated that patients' health-related hope and trust in their rheumatologist were both associated with better medication adherence in SLE.

Phase 2 Trial of Iberdomide in Systemic Lupus Erythematosus.

BACKGROUND: Iberdomide, a cereblon modulator promoting degradation of the transcription factors Ikaros and Aiolos, which affect leukocyte development and autoimmunity, is being evaluated for the treatment of systemic lupus erythematosus (SLE). METHODS: In this phase 2 trial, we randomly assigned patients in a 2:2:1:2 ratio to receive oral iberdomide (at a dose of 0.45, 0.30, or 0.15 mg) or placebo once daily for 24 weeks, in addition to standard medications. The primary end point at week 24 was a response on the SLE Responder Index (SRI-4), which was defined as a reduction of at least 4 points in the Systemic Lupus Erythematosus Disease Activity Index 2000 score (a 24-item weighted score of lupus activity that ranges from 0 to 105, with higher scores indicating greater disease activity), no new disease activity as measured on the British Isles Lupus Assessment Group 2004 index, and no increase of 0.3 points or more in the Physician's Global Assessment score (on a visual-analogue scale ranging from 0 [no disease activity] to 3 [maximal disease]). RESULTS: A total of 288 patients received the assigned intervention: 81 received iberdomide at a dose of 0.45 mg, 82 received iberdomide at a dose of 0.30 mg, 42 received iberdomide at a dose of 0.15 mg, and 83 received placebo. At week 24, the percentages of patients with an SRI-4 response were 54% in the iberdomide 0.45-mg group, 40% in the iberdomide 0.30-mg group, 48% in the iberdomide 0.15-mg group, and 35% in the placebo group (adjusted difference between the iberdomide 0.45-mg group and the placebo group, 19.4 percentage points; 95% confidence interval, 4.1 to 33.4; P = 0.01), with no significant differences between the groups that received the lower doses of iberdomide and the group that received placebo. Iberdomide-associated adverse events included urinary tract and upper respiratory tract infections and neutropenia. CONCLUSIONS: In this 24-week, phase 2 trial involving patients with SLE, iberdomide at a dose of 0.45 mg resulted in a higher percentage of patients with an SRI-4 response than did placebo. Data from larger, longer trials are needed to determine the efficacy and safety of iberdomide in SLE. (Funded by Bristol Myers Squibb; ClinicalTrials.gov number, NCT03161483; EudraCT number, 2016-004574-17.).

A meta-analysis of clinical manifestations in asian systemic lupus erythematous: The effects of ancestry, ethnicity and gender.

OBJECTIVES: Systemic lupus erythematosus (SLE) in Asians is a unique patient group that has been thought to present with more severe organ involvement in comparison to their non-Asian counterparts. We set out to perform a meta-analysis to compare clinical manifestations between ancestries, with a focus on Southeast Asian ethnicities and gender. MATERIALS AND METHODS: A cross-sectional study was performed in conjunction with a meta-analysis to identify differences in prevalences of SLE clinical manifestations. Searches were conducted on Medline for articles comparing between: (i) Asian and non-Asian ancestry; (ii) Southeast Asian ethnicities (Chinese, Malay and Indian); and (iii) male and female Asians. Using random effects model, effect sizes as odd ratios were pooled with DerSimonian and Laird's model. RESULTS: A total of 13 articles were identified and pooled together with our study for this meta-analysis. Comparing among patients of Asian with Non-Asian/European ancestries, no significance difference was found in severe organ manifestations such as renal and neurological involvement [odds ratio (OR): 1.398, p= 0.320 and OR: 1.224, p= 0.526 respectively]. There was significantly greater proportion of Asian SLE patients with thrombocytopenia compared to non-Asian SLE. Chinese SLE patients were less likely to have oral ulcers compared to Indian SLE patients. Lastly, Asian male SLE patients had greater incidence of renal involvement and thrombocytopenia compared to Asian female SLE patients. CONCLUSIONS: Severe SLE manifestations such as renal and neurological involvement were not significantly more frequent in Asian SLE compared to non-Asian/European SLE in this analysis.

Classification of systemic lupus erythematosus in children and adults.

Systemic Lupus Erythematosus (SLE) is an autoimmune multisystem disease with a variable clinical phenotype and no single clinical, laboratory or pathological feature that can be used as a gold standard for disease classification or diagnosis. Classification criteria have been developed in an attempt to define homogenous groups of SLE patients for clinical research. They have been mainly validated in adult cohorts, given the much lower prevalence of SLE before puberty. The three commonly used sets of current classification criteria and their validation studies to date are described in this review. Challenges relating to classification of SLE patients, including important differences across age-groups and ethnicities, are explored along with future directions in the classification of SLE.

Performance of the 2019 European League Against Rheumatism/American College of Rheumatology classification criteria for systemic lupus erythematosus in a multiethnic Malaysian cohort.

AIM: To evaluate the performance of the 2019 European League Against Rheumatism/American College of Rheumatology (EULAR/ACR) classification criteria for systemic lupus erythematosus (SLE) in a multi-ethnic Malaysian cohort and to compare it against the Systemic Lupus International Collaborating Clinics (SLICC) 2012 and ACR 1997 criteria. METHOD: We conducted a retrospective observational study of 205 patients with a diagnosis of SLE and 100 controls who formed the validation cohort. The sensitivity and specificity of the three classification criteria were evaluated and a further sub-analysis was performed in patients with early disease and among the various ethnicities. RESULTS: The sensitivities and specificities of the three classification criteria are as follows: EULAR/ACR (90.8%; 94%), SLICC 2012 (96.1%; 94%), and ACR 1997 (82%; 96%). Among patients with early disease, the sensitivity of the SLICC 2012 was higher than that of EULAR/ACR and ACR 1997 (98% vs 94% and 86%); however, the specificity of EULAR/ACR and ACR 1997 were similar (95.2%) and higher than the SLICC 2012 (93.5%). The SLICC 2012 had higher sensitivity than that of the EULAR/ACR among the Malays (94% vs 90%), Chinese (98% vs 90%), and Indians (100% vs 95%). The specificity of the EULAR/ACR and SLICC 2012 were similar in the Malay and Chinese (93.3% each, and 92% vs 94.6%). CONCLUSION: The EULAR/ACR performed well in our cohort. The EULAR/ACR and SLICC 2012 showed higher sensitivity than the ACR 1997, and the EULAR/ACR showed similar specificity to the ACR 1997 and SLICC 2012 overall, in early disease, and across the different ethnicities.

Black patients with cutaneous lupus are associated with positive family history of cutaneous lupus and systemic lupus.

OBJECTIVES: Various genetic polymorphisms have been associated with an increased risk of cutaneous lupus erythematosus (CLE). However, it is not fully known how often positive family histories occur in patients with CLE. The aims of this study are to determine the rate of positive family history among patients with CLE and to identify risk factors associated with positive family history. METHODS: A retrospective cohort study was conducted among 338 patients with CLE seen in outpatient dermatology clinics in a tertiary referral centre in Dallas, Texas. The primary outcome was positive family history of CLE and/or SLE, as defined by the presence of self-reported CLE and/or SLE in first-degree or more distant relatives of a patient. Univariate analyses were performed to identify risk factors associated with positive family history of CLE and/or SLE in patients with CLE. Multivariable logistic regression analyses were performed to determine significant predictors of positive family history of CLE and/or SLE. RESULTS: 34% (n=114) of patients reported positive family history of CLE and/or SLE. 7% (n=23) of patients with CLE had relatives with CLE, with 5% (n=18) having a first-degree relative with CLE. 30% (n=102) of patients with CLE had relatives with SLE, and 15% (n=52) had a first-degree relative with SLE. Black patients were more likely to have positive family history of CLE and/or SLE (OR 2.13, 95% CI 1.23 to 3.69, p=0.007). CONCLUSIONS: More patients with CLE had positive family history of SLE than CLE. Black patients with CLE were more likely to have a relative with CLE and/or SLE. Providers can use this information to counsel patients with CLE on the risk of other family members having CLE and/or SLE. These data may help identify potentially new genetic polymorphisms associated with positive family history.

Timing of Childhood-Onset Systemic Lupus Erythematosus Diagnosis Relative to Menarche and the Impact on Final Adult Height.

OBJECTIVE: The aim of this study was to examine the impact of timing of a childhood-onset systemic lupus erythematosus (SLE) diagnosis relative to menarchal status, on final height, accounting for disease-associated factors. METHODS: We conducted a cohort study of female patients age <18 years at childhood-onset SLE diagnosis, followed at a tertiary care pediatric center from July 1982 to March 2016 and restricted to patients with documented age of menarche and final height. We compared final height between patients diagnosed pre- and postmenarche. We tested the association of the timing of childhood-onset SLE diagnosis with final height, adjusted for ethnicity, in linear regression models. We performed subgroup analyses of patients with growth during follow-up, additionally adjusting for average daily corticosteroid dose and disease activity. RESULTS: Of 401 female childhood-onset SLE patients in the study, 115 patients (29%) were diagnosed premenarche and 286 (71%) postmenarche. Patients diagnosed premenarche were older at menarche compared with patients diagnosed postmenarche (mean ± SD age 13.5 ± 1.4 versus 12.5 ± 1.3 years; P < 0.001). The mean ± SD final height for girls diagnosed postmenarche (161.4 ± 6.9 cm) was greater than for those diagnosed premenarche (158.8 ± 7.3 cm; P = 0.001). In regression analysis, those diagnosed postmenarche were significantly taller than those diagnosed premenarche, as adjusted for ethnicity and disease severity (mean ± SD ß = 2.6 ± 0.7 cm; P = 0.0006). CONCLUSION: In this large cohort study of girls with childhood-onset SLE, patients diagnosed postmenarche achieved a taller final height than those diagnosed premenarche, even after accounting for ethnicity and disease severity.

Staying moving, staying strong: Protocol for developing culturally appropriate information for Aboriginal people with osteoarthritis, rheumatoid arthritis, lupus and gout.

INTRODUCTION: Addressing disparities in arthritis care is an important yet unmet health need for Aboriginal and Torres Strait Islander people in Australia (respectfully Aboriginal people herewith). Despite the significant prevalence and burden of arthritis within Aboriginal communities, access to care for arthritis is low. One means to reduce existing disparities in health care is to address current challenges relating to the appropriateness and acceptability of health care information resources for Aboriginal people. Health information sources can help to empower patients and their families to have greater involvement in their care and to engage in self-management of their condition. Despite an extensive range of arthritis information resources being available, currently no resources have been culturally adapted and developed in collaboration with Aboriginal consumers with arthritis. This paper outlines the processes that will be undertaken within the Staying Moving, Staying Strong project. This project aims to develop culturally secure arthritis information for Aboriginal people with osteoarthritis, rheumatoid arthritis, lupus and gout. METHODS AND ANALYSIS: The overarching principle guiding this project is cultural security, referring to the incorporation of processes such that the research will not compromise the cultural rights, values and expectations of Aboriginal people. This project will prioritise partnerships, community engagement, community benefit, sustainability, transferability, and capacity building and therefore uphold the cultural rights and values of Aboriginal people. In this six-phase project we will; 1) Establish a community reference group and advisory committee; 2) Explore the health information needs and preferences of Aboriginal people with arthritis; 3) Synthesise the existing key recommendations in high quality clinical practice guidelines on arthritis care; 4) Culturally adapt key clinical recommendations; 5) Develop culturally appropriate arthritis resources and; 6) Qualitatively evaluate the developed resources.

Renal function deterioration is an independent mortality determinant in Koreans diagnosed with lupus nephritis.

OBJECTIVE: To evaluate the predictors of mortality, mortality rate, and causes of death in patients with lupus nephritis (LN) depending on final renal function. METHODS: The cohort included 401 Korean patients diagnosed with LN between 1985 and 2019. We retrospectively analyzed the clinical and laboratory indices, treatment response, and the final renal function. The final renal function was defined by the last stable level of eGFR measured in an out-patient department more than 3 times before death occurred and was categorized into five groups depending on CKD stage. RESULTS: The median follow-up time after the diagnosis of LN was 131 months. No difference in baseline demographic characteristics and laboratory findings was found except for the proportion of Hb less than 10 mg/dl and baseline eGFR (p = 0.011 and 0.037). We found no significant differences in therapeutic parameters, but all the response parameters including treatment response at 6 months (p = 0.004) and 12 months (p = 0.004), time to remission (p < 0.001), final renal response (p < 0.001), and the final renal function (p < 0.001) differed significantly between the two groups. In multivariate Cox proportional hazards analysis, the final renal function was an independent risk factor predicting mortality. The main causes of death were infection and SLE flare. Contrary to existing knowledge, SLE flare also triggered mortality in a few patients with LN progressed to end-stage renal disease (ESRD). Only two cases of mortality occurred in the kidney transplantation (KT) group (n = 25) with a median follow-up period of 224 months. The overall mortality rates calculated using the Kaplan-Meier method were 6.8%, 10.3%, 19.7%, and 28.0% at 5, 10, 20, and 30 years, respectively. CONCLUSION: Renal function deterioration was an independent determinant of mortality in Korean patients with LN. SLE flare also caused mortality in patients with LN who required maintenance dialysis, suggesting the benefit of KT on lupus activity and survival.

Association of MALAT-1 gene single nucleotide polymorphisms with genetic susceptibility to systemic lupus erythematosus.

Background: Abnormal expression and function of long non-coding RNAs (lncRNAs) are closely related to the pathogenesis of systemic lupus erythematosus (SLE). In this study, we aimed to investigate the association of lncRNA metastasis-associated lung adenocarcinoma transcript 1 (MALAT-1) gene single-nucleotide polymorphisms (SNPs) with susceptibility and clinical characteristics of SLE patients. Methods: A case-control study including 489 SLE patients and 492 healthy controls was conducted. Four MALAT-1 SNPs (rs4102217, rs591291, rs11227209, and rs619586) were genotyped in all subjects, their correlation with SLE susceptibility and clinical characteristics were also analyzed. Results: Results showed that the rs4102217 locus was associated with the risk of SLE. In recessive models, the GG+CG genotype of rs4102217 was associated with the decreased risk of SLE compared to CC (p = 0.036, OR = 0.348, 95% CI: 0.124-0.975). In additive models, the GG genotype of rs4102217 was associated with the decreased risk of SLE compared to CC (p = 0.040, OR = 0.355, 95% CI: 0.127-0.996). However, no association was found between MALAT-1 gene polymorphism and clinical manifestations of SLE (all p > 0.05). Conclusion: In summary, MALAT-1 rs4102217 is associated with susceptibility to SLE, suggesting that MALAT-1 may play a role in SLE.