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.
Systemic lupus erythematosus (SLE) is a chronic, systemic autoimmune disease with often nonspecific symptoms that can lead to a delay in diagnosis. The disease disproportionately affects women and minorities. Blacks with SLE also have more severe disease and develop it at an earlier age (1). Despite an increase in the 5-year survival rate from 50% in 1955 to approximately 90% in the 2000s, attributed largely to advances in management of SLE (2), premature mortality among SLE patients persists, often as a result of disease severity, infections, and cardiovascular disease. Because existing SLE mortality estimates based on death certificate data are known to underestimate SLE deaths (3), SLE mortality was analyzed using 2002-2004 data from the population-based Georgia Lupus Registry (1). Incident and prevalent SLE cases matched to the National Death Index through 2016 identified 97 and 401 deaths, respectively. Standardized mortality ratios adjusted for age group, sex, and race were two to three times higher among persons with SLE relative to expected deaths in the general population. Blacks had significantly higher cumulative mortality than did whites, and blacks with both incident and prevalent cases were significantly younger at death (mean age 51.8 and 52.3 years, respectively) than were whites (mean age 64.4 and 65.0 years, respectively). Whites had lower mortality after diagnosis than did blacks; among incident cases, mortality among whites did not occur until 5 years after SLE diagnosis, whereas blacks had significantly and persistently higher mortality from the time of diagnosis. There were no significant differences by sex. Current CDC-supported efforts encourage early detection, diagnosis, and treatment, and enhanced self-management skills to mitigate racial disparities and improve outcomes overall among persons with SLE.
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 older age was associated with lower health-related quality of life (HRQOL) among patients with systemic lupus erythematosus (SLE) and whether differential disease-related damage and activity explained these associations.
Methods: We used cross-sectional data on 684 patients with SLE aged ≥20 years from the Georgians Organized Against Lupus cohort to estimate the associations between age (categorised as 20-39, 40-59 and ≥60 years) and HRQOL (Short Form-12 norm-based domain and physical component summary (PCS) and mental component summary (MCS) scores), using multivariable linear regression. We then examined the effect of disease-related damage and activity on these associations.
Results: The mean age of the cohort was 48.2±13.1 years (range, 20-88 years), with 28.0%, 52.9% and 19.1% of participants being aged 20-39, 40-59 and ≥60 years, respectively; 79.0% were African-American and 93.7% were female. The mean PCS score was 39.3 (41.8, 38.7 and 37.4 among those aged 20-39, 40-59 and ≥60 years, respectively), while the mean MCS score was 44.3 (44.2, 43.8 and 46.1, respectively). In general, lower physical but not mental HRQOL scores were associated with older age. With adjustment, older ages (40-59 and ≥60, respectively, vs 20-39) remained associated (β (95% CI)) with lower PCS (-2.53 (-4.58 to -0.67) and -3.57 (-6.19 to -0.96)) but not MCS (0.47 (-1.46 to 2.41) and 1.20 (-1.52 to 3.92)) scores. Associations of age with HRQOL domain and summary scores were not substantially changed by further adjustment for disease-related damage and/or activity.
Conclusions: Nearly one in five participants in this large, predominantly African-American cohort of patients with SLE was at least 60 years old. The associations of older age with lower physical, but not mental, HRQOL were independent of accumulated SLE damage and current SLE activity. The results suggest that studies of important geriatric outcomes in the setting of SLE are needed to inform patient-centred clinical care of the ageing SLE population.
OBJECTIVE: Whether using provider-attributed end-stage renal disease (ESRD) cause of systemic lupus erythematosus (SLE) in national surveillance data captures the entire population of patients with SLE and ESRD remains uncertain. Our goal was to examine attributed cause of ESRD in US surveillance data among patients with SLE who have developed ESRD.
METHODS: Data from a national registry of treated ESRD (United States Renal Data System (USRDS)) were linked to the population-based Georgia Lupus Registry (GLR). The provider-attributed cause of ESRD was extracted from the USRDS for each validated patient with SLE in the GLR (diagnosed through 2004) who initiated treatment for ESRD through 2012. The percentage of these patients with SLE whose ESRD was subsequently attributed to SLE in the USRDS was calculated, overall and by patient characteristics.
RESULTS: Among 251 patients with SLE who progressed to ESRD, 78.9% had SLE as their attributed cause of ESRD. Of the remaining 53 patients, 43.4%, 18.9% and 15.6% had ESRD attributed to hypertension, diabetes mellitus type II and non-SLE-related glomerulonephritis, respectively. Attribution of ESRD to SLE was higher among patients aged ≤30 (87.9-93.9%) vs >30 (52.6%; p<0.001) but did not differ by sex or race. Having Medicaid (86.2%) or no insurance (93.5%) was associated with greater attribution of ESRD to SLE than having private insurance (72.5%; p=0.02), as was having two or more providers state a diagnosis of SLE (89.0% vs 73.5% with a rheumatologist diagnosis alone; p=0.008).
CONCLUSIONS: These estimates indicate that USRDS-based studies may underreport ESRD among US patients with SLE. However, observed patterns of differential attribution of ESRD cause, particularly by age, suggest that providers may be correctly attributing ESRD to causes other than SLE among some patients with SLE.
Objective: African American patients with systemic lupus erythematosus (SLE) are at high risk for poor outcomes. Both patient characteristics and the severity of the disease may influence physician–patient interactions, which in turn can impact disease outcomes. We aimed to examine whether patient perceptions of interpersonal processes of care (i.e. physician–patient interactions) varied by demographic characteristics, disease activity, and/or depression in African American patients with SLE. Methods: The Georgians Organized Against Lupus (GOAL) is a cohort drawn from a population-based registry of people with SLE. We conducted a cross-sectional analysis of patient-reported data collected in 2016–17 among 698 African American participants (out of 863 GOAL participants). We assessed physician–patient interactions (communication, patient-centered decision making, and physician interpersonal style) through the Interpersonal Processes of Care survey (IPC-29), disease activity through the Systemic Lupus Activity Questionnaire, and depression through the Patient Health Questionnaire-9. Mean scores of the IPC-29 scales were compared by gender, age and educational attainment with Wilcoxon rank-sum 2-sample test or Kruskal Wallis test. We conducted linear trend test to examine demographic-adjusted scores of IPC across severity of disease activity and depression, and multivariate logistic regression analyses to examine the association of disease activity and depression with suboptimal IPC scores. Results: Overall, the lowest mean scores were observed for the patient-centered decision making domain, and specifically about how often doctors assessed patients’ problems to follow recommendations and treatment among females compared with males (mean scores 3.13 ± 1.42 and 3.64 ± 1.38, respectively; p = 0.015). Mean scores for the assumed socioeconomic level subdomain (how often doctors make assumptions about a patient's socioeconomic level) were worse in individuals aged 18–34 (mean score 1.59 ± 0.94), compared to those aged 35–55 (mean score 1.47 ± 0.94; p = 0.033). Patients with some college or higher educational attainment reported poorer mean scores for most communication and interpersonal style scales than those who reported high-school or less. We found significant linear trends of poorer scores for all communication scales across more severe disease activity and depression symptoms, and poorer scores for all interpersonal style scales across more severe disease activity. Multivariate models revealed that while depression was associated with suboptimal quality of both communication (OR 1.20; 95% CI 1.04–1.39) and interpersonal style (OR 1.12; 95% CI 1.01–1.25), disease activity only increased the odds of suboptimal interpersonal style (OR 1.13; 95% CI 1.03–1.25). Conclusion: In the African American population with SLE, suboptimal interactions with providers may be explained in part by the mental and physical symptoms of the patient, regardless of age, gender and education. In addition to standard of care treatment, SLE patients with more severe disease activity and depression might need provider-based interventions focused on communication and interpersonal style.
Objective: African American (AA) people with systemic lupus erythematosus (SLE) are at high morbidity and mortality risk, and they often require multiple medications. Low medication adherence is a highly prevalent, multidimensional problem associated with poor outcomes in people with SLE. Depression, a predictor of low adherence in people with chronic conditions, has been described in over 35% of AAs with SLE. We hypothesized that depressive symptoms would be increasingly associated with low adherence in this population.
Methods: Research subjects predominantly belong to the Georgians Organized Against Lupus cohort, a population-based cohort of predominantly AA individuals with SLE in the Atlanta metropolitan area. Medication adherence and severity of depressive symptoms were measured using validated self-reported tools: The 8-item Morisky Medication Adherence Scale and the 9-item Patient Health Questionnaire, respectively. We used univariate and multivariate logistic regression to examine the odds ratios of low medication adherence across individuals with increasing severity of depressive symptoms.
Results: Among 632 AA SLE participants, 336 (54%) reported low medication adherence and 217 (34.6%) reported "moderate" or "severe" depressive symptoms. In univariate logistic regression, significant risk factors for low adherence were depressive symptoms, low self-efficacy, poor satisfaction with care, female sex, younger age, hurried patient-physician communication, poorer shared decision-making, less compassionate physician communication style, poor/fair health, and higher disease activity score. In multivariate regression, younger age, female sex, and more severe depressive symptoms were associated with low medication adherence.
Conclusions: This is the first study to examine factors associated with low medication adherence among a population-based cohort of AA individuals with SLE. Depression was a strong correlate of low medication adherence. Mental health interventions aiming to address and treat depression may increase medication adherence.
Objective To examine associations of perceived stress with cognitive symptoms among adults with systemic lupus erythematosus (SLE). Methods Among 777 adult (≥18 years) SLE patients, the association of Perceived Stress Scale (PSS) scores with two self-reported cognitive symptoms was examined: forgetfulness (severe/moderate vs. mild/none; from the Systemic Lupus Activity Questionnaire) and difficulty concentrating (all/most vs. some/little/none of the time; from the Lupus Impact Tracker). The study used multivariable logistic regression to estimate the odds ratios (ORs) per minimal important difference (MID = 0.5∗SD) of PSS score and cognitive symptoms. Results Forgetfulness and difficulty concentrating were reported by 41.7% and 29.5%, respectively. Women and those with less education and high disease activity had higher PSS scores and were more likely to report cognitive symptoms than their counterparts. With adjustment for age, race, sex, education, and disease activity, each MID increase in PSS score was associated with higher prevalence of forgetfulness (OR = 1.43, 95% CI 1.29-1.47) and difficulty concentrating (OR = 2.19, 95% CI 1.90-2.52). No substantial differences in this association by age, race, sex, or disease activity were noted. Conclusions SLE patients, particularly those with high disease activity, report a high burden of cognitive symptoms, for which stress may be a modifiable risk factor.
Objectives: Systemic lupus erythematosus (SLE) disproportionately strikes African American women. Social support can potentially reduce disease impact. The purpose of this study is to understand the relationship between organ damage and depression in African American women and how social support influences this relationship. Methods: We used a mixed methods design, analyzing self-reported data on lupus-related organ damage, depression, and social support in 437 African American women with SLE recruited in the Georgians Organized Against Lupus (GOAL) cohort. Moreover, we conducted interviews among 15 GOAL participants to gather patients' perspectives about the role of social support in people who live with lupus. Results: We found a significant association between organ damage and depression (r = 0.163, p = 0.001), as well as between depression and social support (F = 17.574, p < 0.001). The quantitative analysis did not render social support as a significant moderator in the organ damage–depression relationship. Interviews, however, revealed that African American women with the most severe organ damage have the greatest need for support. Conclusions: Social support is a key resource for lupus patients with high disease burden. Overall, these findings highlight the importance of monitoring depressive symptoms in this population and developing interventions aimed to increase social support available to lupus patients.