Does Higher Quality of Care in Systemic Lupus Erythematosus Improve Quality of Life?

OBJECTIVE: To study the association between high quality of care (QOC) and quality of life (QOL) and nonroutine health care use (HCU) in systemic lupus erythematosus. METHODS: Data were derived from 814 participants from the Lupus Outcomes Study sample. Data on sociodemographic information, disease status, medications, and health care variables were collected through annual interviews. QOC was measured at baseline on 13 quality indices amenable to self-report. Follow-up QOL was measured using the Short Form 36 health survey (SF-36) 2 years later. Univariate and multivariate regression analyses assessed the relationship between QOC and SF-36 scores at baseline, and logistic regression analyses evaluated QOC at baseline as a predictor of minimal clinically important difference (MCID) improvements in SF-36 scores, emergency room (ER) visits, and hospitalizations at follow-up. RESULTS: Higher QOC was associated with worse scores on SF-36 domains on univariate analysis at baseline, which was mediated by comorbidities and high disease activity. QOC and the number of years in high QOC were not predictive of MCID improvements in SF-36 scores at follow-up, which were driven by baseline SF-36 scores, disease activity, and nonroutine HCU. A similar pattern was noted for ER visits and hospitalizations, for which disease activity, damage, and glucocorticoid dose were significant predictors and not QOC. CONCLUSION: High QOC at baseline and the number of years with high QOC are not associated with MCID improvement in SF-36 scores and nonroutine HCU on follow-up. High QOC, as determined by currently defined criteria, serves as a surrogate of greater disease activity, morbidity, and nonroutine HCU.

Disparities in Lupus and the Role of Social Determinants of Health: Current State of Knowledge and Directions for Future Research.

Systemic lupus erythematosus (SLE) is a chronic autoimmune disease. The complex relationships between race and ethnicity and social determinants of health (SDOH) in influencing SLE and its course are increasingly appreciated. Multiple SDOH have been strongly associated with lupus incidence and outcomes and contribute to health disparities in lupus. Measures of socioeconomic status, including economic instability, poverty, unemployment, and food insecurity, as well as features of the neighborhood and built environment, including lack of safe and affordable housing, crime, stress, racial segregation, and discrimination, are associated with race and ethnicity in the US and are risk factors for poor outcomes in lupus. In this scientific statement, we aimed to summarize current evidence on the role of SDOH in relation to racial and ethnic disparities in SLE and SLE outcomes, primarily as experienced in the U.S. Lupus Foundation of America's Health Disparities Advisory Panel, comprising 10 health disparity experts, including academic researchers and patients, who met 12 times over the course of 18 months in assembling and reviewing the data for this study. Sources included articles published from 2011 to 2023 in PubMed, Centers for Disease Control and Prevention data, and bibliographies and recommendations. Search terms included lupus, race, ethnicity, and SDOH domains. Data were extracted and synthesized into this scientific statement. Poorer neighborhoods correlate with increased damage, reduced care, and stress-induced lupus flares. Large disparities in health care affordability, accessibility, and acceptability exist in the US, varying by region, insurance status, and racial and minority groups. Preliminary interventions targeted social support, depression, and shared-decision-making, but more research and intervention implementation and evaluation are needed. Disparities in lupus across racial and ethnic groups in the US are driven by SDOH, some of which are more easily remediable than others. A multidimensional and multidisciplinary approach involving various stakeholder groups is needed to address these complex challenges, address these diminish disparities, and improve outcomes.

Socioeconomic, Psychosocial, and Clinical Factors Associated With Employment in Women With HIV in the United States: A Correlational Study.

ABSTRACT: Employment is a social determinant of health, and women living with HIV (WLWH) are often underemployed. This correlational study examined the socioeconomic, psychosocial, and clinical factors associated with employment among WLWH (n = 1,357) and women at risk for HIV (n = 560). Descriptive and inferential statistics were used to evaluate factors associated with employment status. Employment was associated (p ≤ .05) with better socioeconomic status and quality of life (QOL), less tobacco and substance use, and better physical, psychological, and cognitive health. Among WLWH, employment was associated (p ≤ .05) with improved adherence to HIV care visits and HIV RNA viral suppression. Using multivariable regression modeling, differences were found between WLWH and women at risk for HIV. Among WLWH, household income, QOL, education, and time providing childcare remained associated with employment in adjusted multivariable analyses (R2 = .272, p < .001). A better understanding of the psychosocial and structural factors affecting employment is needed to reduce occupational disparities among WLWH.

Quality-Adjusted Life-Years Lost Due to Physical Inactivity in a US Population With Osteoarthritis.

OBJECTIVE: One-half of the 14 million persons in the US with knee osteoarthritis (OA) are not physically active, despite evidence that physical activity (PA) is associated with improved health. We undertook this study to estimate both the quality-adjusted life-year (QALY) losses in a US population with knee OA due to physical inactivity and the health benefits associated with higher PA levels. METHODS: We used data from the Osteoarthritis Initiative and the Centers for Disease Control and Prevention to estimate the proportions of a US population with knee OA ages ≥45 years that are inactive, insufficiently active, and active, and the likelihood of a shift in their PA level. We used the OA Policy Model, a computer simulation of knee OA, to determine QALYs lost due to inactivity and to measure potential benefits of increased PA (comorbidities averted and QALYs saved). RESULTS: Among 13.7 million persons with knee OA, a total of 7.5 million QALYs, or 0.55 QALYs per person, were lost due to inactivity or insufficient PA relative to activity over their remaining lifetimes. Black Hispanic women experienced the highest losses, at 0.76 QALYs per person. Women of all races/ethnicities had ~20% higher loss burdens than men. According to our model, if 20% of the inactive population were instead active, 95,920 cases of cancer, 222,413 of cardiovascular disease, and 214,725 of diabetes mellitus would potentially be averted, and 871,541 potential QALYs would be saved. CONCLUSION: Physical inactivity leads to substantial QALY losses in a US population with knee OA. Increases in the activity levels in even a fraction of this population may have considerable collateral health benefits, potentially averting cases of cancer, cardiovascular disease, and diabetes mellitus.

Screening for depression in chronic obstructive pulmonary disease.

Depression and chronic obstructive pulmonary disease (COPD) are major causes of disability. Identifying COPD patients at risk for depression would facilitate the alleviation of an important comorbidity conferring additional risk for poor outcomes. The purpose of this study was to determine the utility of a brief screening measure, the 15-item Geriatric Depression Scale (GDS-15), in detecting the mood disorders in persons with COPD. This is a cross-sectional study of 188 persons with COPD, stratified by age (65 and older versus less than 65) and COPD severity using Global Initiative for Chronic Obstructive Lung Disease (GOLD) staging. Screening cut-points were empirically derived using threshold selection methods and receiver operating characteristic (ROC) curves were estimated. The GDS-15 was used as a screening measure and diagnoses of Major Depressive Disorder (MDD) or other mood disorders were determined using a "gold standard" standardized structured clinical interview. Of the 188 persons with COPD, 25% met criteria for any mood disorder and 11% met criteria for MDD. Optimal threshold estimations suggested a GDS cut score of 5, which yielded adequate sensitivity and specificity in detecting MDD (81% and 87%, respectively) and correctly classified 86% of participants. To detect the presence of any mood disorder, a cut score of 4 was suggested yielding sensitivity and specificity of 67% and 82%, respectively; correctly classifying 79%. These results suggest that mood disorders are relatively common among persons with COPD. The GDS-15 is a useful screening measure to identify patients at risk for depression.

Patient-Reported Outcomes Predict Mortality in Lupus.

OBJECTIVE: Physician-assessed disease activity and damage predict mortality in systemic lupus erythematosus (SLE). Patient-reported outcomes (PROs) are known predictors of mortality in other chronic diseases, but this relationship has not been well examined in SLE. The aim of the present study was to assess whether PROs predict mortality in SLE. METHODS: Data were derived from the University of California at San Francisco Lupus Outcomes Study (n = 728). PROs (Medical Outcomes Study Short Form 36 [SF-36] subscales), self-rated health, and depression (Center for Epidemiologic Studies Depression scale [CES-D]) from 2007 (baseline data [T0]) were used to predict mortality (censored 2015). Univariate Cox regression analyses were completed for each PRO as a predictor of mortality, and multivariate Cox regression with covariates for each PRO separately. Covariates were age, sex, race/ethnicity, poverty, disease duration, disease activity (Systemic Lupus Activity Questionnaire), and damage (Brief Index of Lupus Damage). RESULTS: The mean ± SD age of patients was 50.6 ± 12.6 years. Ninety-two percent of patients were women and 68.5% were white. There were 71 deaths (9.1%). In univariate analyses, both the SF-36 physical component subscale score and self-rated health were associated with mortality, and the SF-36 mental health subscale and CES-D scores were not associated with mortality. In multivariate analyses, lower scores of SF-36 physical function at T0 independently predicted mortality after controlling for all other covariates (hazard ratio 0.97 [95% confidence interval 0.94-0.99]; P < 0.01). CONCLUSION: Patient-reported physical function independently predicted mortality in SLE, even after accounting for demographics (including poverty) and disease (duration, activity, and damage). Because PROs are easy to assess, they may be used to triage, track, and guide early interventions for those at high risk of mortality in SLE.

Longitudinal disease- and steroid-related damage among adults with childhood-onset systemic lupus erythematosus.

OBJECTIVES: Determine whether adults with childhood-onset systemic lupus erythematosus (cSLE) are at increased risk for disease- and steroid-related damage as compared to individuals with adult-onset SLE (aSLE), and whether they continue to accumulate disease damage in adulthood. METHODS: Data derive from the 2007-2015 cycles of the Lupus Outcomes Study, a longitudinal cohort of adults with confirmed SLE. The Brief Index of Lupus Damage (BILD), a validated, patient-reported measure, was used to assess SLE-associated damage. Participants with baseline BILD were included (N = 1035). Diagnosis at age < 18 years was defined as cSLE (N = 113). Outcome variables included BILD score at baseline and follow-up, clinically significant change in BILD score over follow-up period, and presence of steroid-related damage (cataracts, osteoporosis-related fracture, avascular necrosis or diabetes mellitus). RESULTS: Mean time between baseline and follow up BILD assessment was 6.3 ±â€¯1.7 years. In adjusted analyses, participants with cSLE and aSLE had similar levels of disease-related damage, and accumulated damage at similar rates. Participants with cSLE were more likely to report steroid-related damage (OR 1.7, 95% CI 1.1-2.8) in the adjusted analysis as compared to those with aSLE. Likelihood of steroid-related damage increased with disease duration for both groups, but was consistently higher among cSLE participants. CONCLUSION: In this longitudinal cohort of adults with SLE, participants continued to accumulate damage at similar rates over time, regardless of age at onset or disease duration. Childhood-onset predicted increased risk of steroid-related damage. Aggressive use of steroid-sparing treatment strategies during childhood may be important to prevent steroid-related damage in adulthood.

Final adult height of patients with childhood-onset systemic lupus erythematosus: a cross sectional analysis.

BACKGROUND: To compare final height to mid-parental target height among adults with childhood-onset systemic lupus erythematosus (cSLE) versus adult-onset SLE (aSLE), and to evaluate the impact of age at SLE onset on final height. METHODS: Data derived from the Lupus Outcomes Study, a longitudinal cohort of adults with SLE, was used for this cross-sectional analysis (N = 728). Participants aged 18-63 years with complete height data were included (N = 566) and were classified as cSLE if age at diagnosis was < 18 years (N = 72). The Tanner formula was used to calculate mid-parental target height. Multivariate linear regression was used to determine mean difference between final height and target height. Multivariate logistic regression was used to compare odds of substantially reduced final height, defined as > 2 SD below target height. Separate analyses were conducted for females and males to account for differences in timing of the pubertal growth spurt for each sex. RESULTS: Participants with cSLE were, on average, 2.4 cm shorter than their target height (95% CI -4, - 0.7). The adjusted odds ratio (OR) for substantially reduced final height was 3.9 (95% CI + 2.0, + 7.2, p < 0.001) as compared to participants with aSLE. Females diagnosed between 11 and 13 years were at greatest risk for substantially reduced final height, with adjusted OR of 11.2 (95% CI + 3.4, + 36.3) as compared to participants with aSLE (p < 0.001). CONCLUSIONS: cSLE is associated with shorter-than-expected final height. Onset of SLE in the pubertal period, near the time of maximum linear growth, may have a particularly significant impact on final height.

Predictors of stopping and starting disease-modifying antirheumatic drugs for rheumatoid arthritis.

OBJECTIVE: Disease-modifying antirheumatic drugs (DMARDs) are the standard of care for rheumatoid arthritis (RA); however, studies have found that many patients do not receive them. We examined predictors of starting and stopping DMARDs among a longitudinal cohort of patients with RA. METHODS: Study participants came from a cohort of RA patients recruited from a random sample of rheumatologists' practices in Northern California. We examined patterns and predictors of stopping and starting nonbiologic and biologic DMARDs during 1982-2009 based on annual questionnaires. Stopping was defined as stopping all DMARDs and starting was defined as transitioning from no DMARDs to any DMARDs across 2 consecutive years. RESULTS: The analysis of starting DMARDs included 471 subjects with 1,974 pairs of years with no DMARD use in the first of 2 consecutive years. From this population, subjects started DMARD use by year 2 in 313 (15.9%) of the pairs. The analysis of stopping DMARDs included 1,026 subjects with 7,595 pairs of years with DMARD use in the first of 2 consecutive years; in 423 pairs (5.6%), subjects stopped DMARD use by year 2. In models that adjusted for RA-related factors, sociodemographics, and comorbidities, significant predictors of starting DMARDs included younger age, Hispanic ethnicity, shorter disease duration, and the use of oral glucocorticoids. In separate adjusted models, predictors of stopping DMARDs included Hispanic ethnicity and low income, while younger age was associated with a reduced risk of stopping. CONCLUSION: Efforts to improve DMARD use should focus on patient age, ethnicity, and income and RA-related factors.

Changes in use of disease-modifying antirheumatic drugs for rheumatoid arthritis in the United States during 1983-2009.

OBJECTIVE: Use of nonbiologic disease-modifying antirheumatic drugs (DMARDs) and/or biologic DMARDs is generally recommended to improve the prognosis of patients with rheumatoid arthritis (RA). The objective of this study was to describe the changing trends in DMARD use for RA over the past 2 decades. METHODS: We analyzed data from an open longitudinal cohort of RA patients recruited from rheumatologists' practices in northern California. We examined baseline demographic and clinical characteristics of the participants and their long-term DMARD use through annual comprehensive structured telephone interviews. RESULTS: A total of 1,507 established RA patients were recruited through 5 enrollment periods between 1983 and 2009. Between 1983 and 2009, the use of any DMARD increased from 71% of all patients to 83% (P for trend < 0.0001). In 2009, 43% received a biologic DMARD, 34% were on both nonbiologic and biologic DMARDs, and 40% were treated with only nonbiologic DMARDs. The 4 most commonly used nonbiologic DMARDs in 2009 were methotrexate (49%), hydroxychloroquine (30%), leflunomide (13%), and sulfasalazine (7%). Etanercept (20%) was the most commonly used biologic DMARD in 2009, followed by infliximab (10%), adalimumab (9%), and abatacept (6%). Use of oral steroids was common (40-50%) and remained similar throughout the study period. CONCLUSION: There has been a significant increase in the use of DMARDs for RA over the past 2 decades. However, 15% of the individuals with a clinical diagnosis of RA were not receiving DMARDs in 2009. Future research should focus on sociodemographic and clinical factors associated with DMARD use for RA.

Use of disease-modifying medications for rheumatoid arthritis by race and ethnicity in the National Ambulatory Medical Care Survey.

OBJECTIVE: Disease-modifying antirheumatic drugs (DMARDs) are recommended for virtually all patients with rheumatoid arthritis (RA). We investigated the use of DMARDs in patients with RA in a nationally representative sample of visits to US physicians in the National Ambulatory Care Medical Survey (NAMCS). METHODS: We analyzed the NAMCS visit data from 1996 through 2007 if the physician noted a diagnosis of RA. DMARD utilization was based on the medications listed by the physician. We used generalized linear models to examine the adjusted associations between DMARD use and potential predictors. RESULTS: Of the 859 visits with a diagnosis code of RA identified over the study period, 404 visits (47%; 95% confidence interval [95% CI] 44-50%) had an associated DMARD. The percentage of RA visits with DMARDs increased slightly over the 12 years (P = 0.048), with biologic DMARDs increasing to 20% of visits after their introduction (P for trend <0.001). In fully adjusted models, African American race was associated with a 30% reduction in DMARD prescribing (risk ratio [RR] 0.70, 95% CI 0.48-1.00). A visit to a rheumatologist was the strongest correlate of DMARD prescribing (RR 2.33, 95% CI 1.89-2.86). Among visits to nonrheumatologists, African Americans were significantly less likely than whites to receive a DMARD (RR 0.39, 95% CI 0.17-0.92), but not among visits with rheumatologists (RR 0.81, 95% CI 0.52-1.27). CONCLUSION: In the NAMCS, most visits coded with RA did not have an associated DMARD prescription. African Americans were less likely to receive DMARDs than whites, particularly when visiting nonrheumatologists.

Adult outcomes of childhood-onset rheumatic diseases.

A number of studies published over the past 10 years have examined the long-term health, functional and quality of life outcomes of adults with childhood-onset rheumatic diseases such as juvenile idiopathic arthritis, systemic lupus erythematosus, juvenile dermatomyositis and localized scleroderma. As increasing numbers of patients with these conditions survive into adulthood, understanding the adult outcomes of these pediatric conditions has become ever-more important. Identifying modifiable risk factors for poor outcomes is vital to improving care for these patients. In addition, as these conditions and their treatments can affect cardiovascular health, bone health and fertility, particular attention needs to be paid to these outcomes. Preparing patients and their families for a successful transition from pediatric to adult rheumatology care is an important first-step in the long-term management strategy for this expanding patient population.

Using the Center for Epidemiologic Studies Depression Scale to screen for depression in systemic lupus erythematosus.

OBJECTIVE: Identifying persons with systemic lupus erythematosus (SLE) at risk for depression would facilitate the identification and treatment of an important comorbidity conferring additional risk for poor outcomes. The purpose of this study was to determine the utility of a brief screening measure, the Center for Epidemiologic Studies Depression Scale (CES-D), in detecting mood disorders in persons with SLE. METHODS: This cross-sectional study examined 150 persons with SLE. Screening cut points were empirically derived using threshold selection methods, and receiver operating characteristic curves were estimated. The empirically derived cut points of the CES-D were used as the screening measures and were compared to other commonly used CES-D cut points in addition to other commonly used methods to screen for depression. Diagnoses of major depressive disorder or other mood disorders were determined using a "gold standard" structured clinical interview. RESULTS: Of the 150 persons with SLE, 26% of subjects met criteria for any mood disorder and 17% met criteria for major depressive disorder. Optimal threshold estimations suggested a CES-D cut score of 24 and above, which yielded adequate sensitivity and specificity in detecting major depressive disorder (88% and 93%, respectively) and correctly classified 92% of participants. To detect the presence of any mood disorder, a cut score of 20 and above was suggested, yielding sensitivity and specificity of 87% and correctly classifying 87%. CONCLUSION: These results suggest the CES-D may be a useful screening measure to identify patients at risk for depression.

Cardiovascular and disease-related predictors of depression in systemic lupus erythematosus.

OBJECTIVE: Depression and cardiovascular disease are common and debilitating comorbidities associated with systemic lupus erythematosus (SLE). In this study, history of cardiovascular events, cardiovascular risk factors, and SLE disease-related factors were evaluated as longitudinal predictors of depression in a large cohort of patients with SLE. METHODS: Data were derived from 663 adult participants in the 2004-2008 Lupus Outcomes Study, who were followed for up to 5 annual interviews. Multivariate logistic regression analyses using generalized estimating equations were used to determine predictors of the development of increased depressive symptom severity over a 12-month period (Center for Epidemiologic Studies Depression Scale [CES-D] score of 23 or greater), yielding 2,224 paired observations. Predictors included sociodemographics, traditional cardiovascular risk factors (reported presence of heart disease, history of stroke or myocardial infarction, hypertension, hypercholesterolemia, diabetes mellitus, obesity, smoking status, and family history), and SLE-specific risk factors (glucocorticoid use, renal involvement, disease duration, and disease activity). RESULTS: The annual incidence of depression was 12% in this cohort. Multivariate predictors of new-onset depression included younger age (ages 20-39 years: odds ratio [OR] 2.3, 95% confidence interval [95% CI] 1.3-3.9; ages 40-59 years: OR 1.8, 95% CI 1.1-2.7), Hispanic/Latino ethnicity (OR 1.8, 95% CI 1.2-2.8), having some college education (OR 1.8, 95% CI 1.1-3.0), baseline CES-D score (OR per point 1.1, 95% CI 1.1-1.2), presence of diabetes mellitus (OR 1.8, 95% CI 1.1-2.8), and baseline SLE disease activity (OR 1.2, 95% CI 1.1-1.4). CONCLUSION: These results suggest that, in addition to known sociodemographic factors, the presence of diabetes mellitus and SLE disease activity may play a role in the development of depression in SLE.