Systemic Lupus Activity Questionnaire Research Articles

Evaluation of Type 2 SLE symptoms in patients with a range of lupus nephritis activity.

Type 2 systemic lupus erythematosus (SLE) symptoms, including fatigue, fibromyalgia, and brain fog, contribute to poor health-related quality of life (HRQoL) in patients with lupus. To test the hypothesis that Type 1 (classical inflammatory lupus) activity is associated with Type 2 SLE activity, we characterized the features of Type 2 SLE in patients with a range of lupus nephritis (LN) activity. This was a cross-sectional study of SLE patients [American College of Rheumatology (ACR) 1997 or Systemic Lupus International Collaborating Clinics (SLICC) 2012 classification criteria] from June 2018 to March 2020. Patients completed the Systemic Lupus Activity Questionnaire (SLAQ) and the Polysymptomatic Distress Scale. Patients were divided into groups based on their renal status. Active nephritis was defined using the Systemic Lupus Erythematosus Disease Activity Index (SLEDAI) lupus nephritis parameter. Differences across groups were analyzed by Fisher's exact test and ANOVA. In this cohort of 244 patients (93% female, mean age 43years, 58% Black), 10% had active nephritis, 35% had historical nephritis, and 55% never had nephritis (non-nephritis). Active nephritis and non-nephritis patients had a similar burden of Type 2 SLE symptoms, despite a difference in Type 1 SLE activity. Patients with active nephritis had higher Type 2 PGA (Physician Global Assessment) scores and reported more Type 2 SLE symptoms than inactive nephritis patients. Patients with inactive nephritis had the lowest Type 2 SLE activity. While Type 2 SLE symptoms are common in SLE, our findings suggest that patients with active nephritis experience significant Type 2 SLE symptoms that may be ameliorated as nephritis improves. We also observed that non-nephritis patients had a similar burden of Type 2 SLE symptoms as patients with active nephritis, despite having on average lower Type 1 SLE activity. Therefore, the etiology of Type 2 SLE symptoms is likely multifactorial and may be driven by inflammatory and non-inflammatory biopsychosocial factors. Key Points • Patients with active nephritis experienced significant Type 2 symptoms that may be ameliorated as nephritis improves. • Non-nephritis patients had a similar burden of Type 2 SLE symptoms as patients with active nephritis, despite having on average lower Type 1 SLE activity. • Because etiology of Type 2 SLE symptoms is likely multifactorial and may be driven by inflammatory and non-inflammatory biopsychosocial factors.

Medication Cost Concerns and Disparities in Patient-Reported Outcomes Among a Multiethnic Cohort of Patients With Systemic Lupus Erythematosus.

Concerns about the affordability of medications are common in systemic lupus erythematosus (SLE), but the relationship between medication cost concerns and health outcomes is poorly understood. We assessed the association of self-reported medication cost concerns and patient-reported outcomes (PROs) in a multiethnic SLE cohort. The California Lupus Epidemiology Study is a cohort of individuals with physician-confirmed SLE. Medication cost concerns were defined as having difficulties affording SLE medications, skipping doses, delaying refills, requesting lower-cost alternatives, purchasing medications outside the United States, or applying for patient assistance programs. Linear regression and mixed effects models assessed the cross-sectional and longitudinal association of medication cost concerns and PROs, respectively, adjusting for age, sex, race and ethnicity, income, principal insurance, immunomodulatory medications, and organ damage. Of 334 participants, medication cost concerns were reported by 91 (27%). Medication cost concerns were associated with worse Systemic Lupus Activity Questionnaire (SLAQ; beta coefficient [β] 5.9, 95% CI 4.3-7.6; P < 0.001), 8-item Patient Health Questionnaire depression scale (PHQ-8; β 2.7, 95% CI 1.4-4.0; P < 0.001), and Patient-Reported Outcomes Measurement Information System (PROMIS; β for physical function -4.6, 95% CI -6.7 to -2.4; P < 0.001) scores after adjusting for covariates. Medication cost concerns were not associated with significant changes in PROs over 2-year follow-up. More than a quarter of participants reported at least 1 medication cost concern, which was associated with worse PROs. Our results reveal a potentially modifiable risk factor for poor outcomes rooted in the unaffordability of SLE care.

Perceived Stress and Prediction of Worse Disease Activity and Symptoms in a Multiracial, Multiethnic Systemic Lupus Erythematosus Cohort.

Studies have suggested a potential link between traumatic experiences, psychological stress, and autoimmunity, but the impact of stress on disease activity and symptom severity in systemic lupus erythematosus (SLE) remains unclear. The present study was undertaken to examine whether increases in perceived stress independently associate with worse SLE disease outcomes over 3 years of follow-up. Participants were drawn from the California Lupus Epidemiology Study (CLUES). Stress was measured annually using the 4-item Perceived Stress Scale (PSS). Participants with increases of ≥0.5 SD in PSS score were defined as having an increase in stress. Four outcomes were measured at the year 3 follow-up visit: physician-assessed disease activity (Systemic Lupus Erythematosus Disease Activity Index); patient-reported disease activity (Systemic Lupus Activity Questionnaire); pain (Patient-Reported Outcomes Measurement Information System [PROMIS] pain interference scale); and fatigue (PROMIS fatigue scale). Multivariable linear regression evaluated longitudinal associations of increase in stress with all 4 outcomes while controlling for potential confounders. The sample (n=260) was 91% female, 36% Asian, 30% White, 22% Hispanic, and 11% African American; the mean ± SD age was 46 ± 14 years. In adjusted longitudinal analyses, increase in stress was independently associated with greater physician-assessed disease activity (P=0.015), greater self-reported disease activity (P < 0.001), more pain (P=0.019), and more fatigue (P < 0.001). In a racially diverse sample of individuals with SLE, those who experienced an increase in stress had significantly worse disease activity and greater symptom burden at follow-up compared to those with stress levels that remained stable or declined. Findings underscore the need for interventions to bolster stress resilience and support effective coping strategies among individuals living with lupus.

The association of trauma with self-reported flares and disease activity in systemic lupus erythematosus (SLE).

Trauma has been linked to incident SLE, but its relationship with SLE disease activity is unknown. This analysis examines associations between trauma exposures and patient-reported SLE disease activity and flares. Data were from the California Lupus Epidemiology Study (CLUES). Flares were self-reported as any flare and, of those, flares accompanied by medical care (hospitalization or physician contact). The Systemic Lupus Activity Questionnaire (SLAQ) assessed disease activity. The Brief Trauma Questionnaire (BTQ) assessed all historical trauma exposures. The Adverse Childhood Experiences (ACEs) questionnaire was available for a subset. Multivariable regression analyses (n = 252) examined whether trauma exposure was associated with flares or SLAQ controlling for age, sex, poverty, race/ethnicity, comorbidities, perceived stress, disease duration and self-reported disease damage. Excluding exposure to serious illness, 63.4% reported ≥1 trauma exposure. Any traumatic event, excluding illness, doubled the odds of a flare [OR 2.27 (95% CI 1.24, 4.17)] and was associated with significantly higher SLAQ scores [β 2.31 (0.86, 3.76)]. Adjusted odds of any flare and flare with medical care were significantly elevated for those with both BTQ and ACE exposures [5.91 (2.21, 15.82) and 4.69 (1.56, 14.07), respectively]. SLAQ scores were also higher for those with both exposures [β 5.22 (3.00, 7.44)]. In this cohort, those with a history of trauma reported more flares and greater disease activity. Identifying mechanisms of associations between trauma and disease activity and flares, as well as interventions to mitigate the effects of trauma exposures is critical, given the high rates of trauma exposures.

Self-Reported Anxiety and Depression in a Monocentric Cohort of Patients With Systemic Lupus Erythematosus: Analysis of Prevalence, Main Determinants, and Impact on Quality of Life.

Aims of the studyTo analyze the prevalence of self-reported anxiety and depression in a monocentric cohort of patients with Systemic Lupus Erythematosus (SLE); to study the main determinants and the impact on quality of life (QoL).MethodsA cross-sectional observational study including adult outpatients with SLE. Demographic and clinical data were analyzed: indices of disease activity (SELENA-SLEDAI); damage (SLICC-DI); comorbidities and concomitant therapies. The definitions for remission (DORIS) and “Lupus Low Disease Activity State” (LLDAS) were applied. At enrollment, each patient completed the following questionnaires: SF-36, FACIT-Fatigue, Lupus Impact Tracker (LIT), Systemic Lupus Activity Questionnaire (SLAQ), and the Hospital Anxiety and Depression Scale (HADS) in order to self-assess anxiety and depression symptoms. The Student t-test and Chi2 tests were conducted for univariate analysis. The Spearman test was used for linear correlation between continuous data. Multivariate analysis was performed by multiple linear and logistic regression.ResultsOne hundred fifty-four consecutive patients with SLE were enrolled, the majority female and Caucasian with a mean age = 43.3 ± 13.7 years. 79.9% were in LLDAS or remission. 36.4% had a SDI > 1. 13.7% of patients had concomitant fibromyalgia. 37.4% had symptoms indicating anxiety and 25% of depression according to the HADS questionnaire. In the multivariate analysis, patients with active disease were significantly more anxious and depressed (p < 0.01) compared to patients in LLDAS or remission. Fibromyalgia and older age were independently associated with anxiety and depression, respectively (p < 0.05). Active skin involvement was significantly linked to depression (p < 0.05). Higher scores on the HADS questionnaire (higher levels of anxiety and depression) were found to be significantly linked to patients’ perception of higher disease activity and worse quality of life, irrespective of disease activity, age and fibromyalgia.ConclusionSymptoms of anxiety and depression are frequent in SLE patients, including outpatients with mild/moderate disease. Such symptoms have a significant negative impact on QoL and perception of disease activity, regardless of other factors. Moreover, disease activity, advanced age and fibromyalgia appear to be significantly linked to mood disorders. Assessing symptoms of the anxious-depressive spectrum in patients with SLE could lead to improvement in patients’ perception of health status and quality of life.

The use of patient-reported outcome measures to classify type 1 and 2 systemic lupus erythematosus activity.

We developed a model that categorizes systemic lupus erythematosus (SLE) activity into two dimensions: Type 1 SLE consists of inflammatory activity, including arthritis, nephritis, and rashes; Type 2 SLE includes fatigue, myalgia, mood disturbance, and cognitive dysfunction. Patient-reported outcome (PRO) measures have received attention as a way to capture symptomatology of SLE. The objective of this study was to explore the use of existing PRO measures to classify Type 1 and 2 SLE activity. Systemic lupus erythematosus patients completed three questionnaires: Systemic Lupus Activity Questionnaire (SLAQ), Polysymptomatic Distress Scale (PSD), and Patient Health Questionnaire (PHQ-2). SLE Disease Activity Index (SLEDAI) and physician global assessments (PGA; 0-3) for Type 1 and Type 2 activity were also recorded. High Type 1 SLE activity was defined as cSLEDAI ≥4 (scored without labs), SLEDAI ≥6, active nephritis, or Type 1 PGA ≥1.0. High Type 2 SLE activity was defined as Type 2 PGA ≥1.0. Patients with both high Type 1 and 2 activity were defined as Mixed SLE, and patients with low Type 1 and 2 activity were defined as Minimal SLE. Data were reduced with a factor analysis. Using a reduced set of 13 variables, multinomial logistic regression models estimated the probability of Minimal, Type 1, Type 2, and Mixed SLE classification. The study included 208 patients with SLE. The model accurately predicted the clinician-based Type 1 and 2 SLE classification in 63% of patients; 73% of patients had their Type 1 SLE activity accurately predicted; and 83% had their Type 2 SLE activity accurately predicted. Performance varied by group: 87% of Minimal patients were correctly predicted to be in the Minimal SLE group, yet only about one-third of patients in the Type 1 group were correctly predicted to be in the Type 1 group. Our findings indicate Type 2 SLE activity can be identified by patient-reported data. The use of PROs was not as accurate at predicting Type 1 activity. These findings highlight the challenges of using PROs to categorize and classify SLE symptoms since some manifestations of Type 1 activity (e.g., nephritis) may be essentially clinically silent while other Type 1 manifestations may cause severe symptoms.

Validation and adaptation of the Spanish version of the systemic lupus activity questionnaire (S-SLAQ) in an Argentinean population.

To validate the systemic lupus activity questionnaire (SLAQ) in Spanish language. The SLAQ questionnaire was translated and adapted in Spanish. Consecutive SLE patients from 8 centers in Argentina were included. A rheumatologist completed a Systemic Lupus Activity Measure (SLAM), Systemic Lupus Erythematosus Disease Activity Index (SLEDAI)-2K, and a physician's assessment. Reliability was assessed by internal consistency (Cronbach's alpha), stability by test-retest reliability (intraclass correlation coefficient), and construct validity by evaluating the correlation with clinically relevant scores. Sensitivity and specificity for clinically significant disease activity (SLEDAI ≥6) of different S-SLAQ cut-off points were evaluated. We included 97 patients ((93% female, mean age: 40 years (SD14.7)). Internal consistency was excellent (Cronbach's alpha = 0.84, p < 0.001), and the intraclass correlation coefficient was 0.95 (p < 0.001). Mean score of S-SLAQ was 8.2 (SD 7.31). Correlation of S-SLAQ was moderate with Patient NRS (r= 0.63 p< 0.001), weak with SLAM-no lab (r = 0.42, p <0.001) and SLAM (r = 0.38, p < 0.0001), and very weak with SLEDAI-2K (r = 0.15, p =0.1394). Using the S-SLAQ cutoff of five points, the sensitivity was 72.2% and specificity was 37.9%, for clinically significant disease activity. The S-SLAQ showed good validity and reliability. A good correlation, similar to the original instrument, was observed with patient´s global disease activity. No correlation was found between S-SLAQ and gold standard disease activity measures like SLEDAI-2K and SLAM. The S-SLAQ cutoff point of 5 showed a good sensitivity to identify the active SLE population and therefore could be an appropriate screening instrument for disease activity in clinical and epidemiological studies.

Quick Systemic Lupus Activity Questionnaire (Q-SLAQ): a simplified version of SLAQ for patient-reported disease activity

ObjectivesMost indices of disease activity in SLE combine physicians’ assessments and laboratory tests. However, there is also a need to capture patients’ perspectives of disease activity. Consequently, we need new,...

Delayed diagnosis adversely affects outcome in systemic lupus erythematosus: Cross sectional analysis of the LuLa cohort

ObjectiveDespite increased physician’s awareness and improved diagnostic and serological testing in the recent years, the interval between the initial symptoms and the diagnosis of Systemic lupus erythematosus (SLE) is still very long. Our aim was to study this delay and its association to the outcome of the disease.MethodsInformation on demographics, onset of first symptoms, first physicians visit and time of diagnosis was assessed by self-reported questionnaires among SLE patients in Germany (LuLa cohort, n = 585) in the year 2012. Disease activity (Systemic Lupus Activity Questionnaire; SLAQ), disease related damage (Brief Index of Lupus Damage; BILD), health related quality of life (Short Form 12) and fatigue (FSS) were chosen as proxies for outcome. Linear regression analysis was used to analyze the association of the delay in diagnosis to the outcome, adjusted for age, disease duration and sex.ResultsMean duration between the onset of symptoms and the diagnosis of SLE was 47 months (SD 73). The longer the time to diagnosis, the higher the disease activity (β = 0.199, p < 0.0001), the disease-related damage (β = 0.137, p = 0.002) and fatigue (β 0.145, p = 0.003) and the lower the health-related quality of life (physical β = −0.136, p = 0.004, mental β = −0.143, p = 0.004).ConclusionIn systemic lupus erythematosus, longer time to diagnosis was associated with worse outcome. Concepts in care with the intention to shorten the time to diagnosis are needed to improve the long-term outcome of the disease.

Dietary Omega Polyunsaturated Fatty Acid Intake and Patient-Reported Outcomes in Systemic Lupus Erythematosus: The Michigan Lupus Epidemiology and Surveillance Program.

ObjectiveTo examine associations between dietary intake of omega‐3 (n‐3; generally antiinflammatory) and omega‐6 (n‐6; generally proinflammatory) fatty acids and patient‐reported outcomes in systemic lupus erythematosus (SLE).MethodsThis study was based on the population‐based Michigan Lupus Epidemiology and Surveillance cohort. Estimates of n‐3 and n‐6 intake were derived from Diet History Questionnaire II items (past year with portion size version). Patient‐reported outcomes included self‐reported lupus activity (Systemic Lupus Activity Questionnaire [SLAQ]). Multivariable regression, adjusted for age, sex, race, and body mass index, was used to assess associations between absolute intake of n‐3 and n‐6, as well as the n‐6:n‐3 ratio, and patient‐reported outcomes.ResultsAmong 456 SLE cases, 425 (93.2%) were female, 207 (45.4%) were African American, and the mean ± SD age was 52.9 ± 12.3 years. Controlling for potential confounders, the average SLAQ score was significantly higher by 0.3 points (95% confidence interval [95% CI] 0.1, 0.6; P = 0.013) with each unit increase of the n‐6:n‐3 ratio. Both lupus activity and Patient‐Reported Outcomes Measurement Information System (PROMIS) sleep disturbance scores were lower with each 1‐gram/1,000 kcal increase of n‐3 fatty acids (SLAQ regression coefficient β = –0.8 [95% CI –1.6, 0.0]; P = 0.055; PROMIS sleep β = –1.1 [95% CI –2.0, –0.2]; P = 0.017). Higher n‐3 intakes were nonsignificantly associated with lower levels of depressive symptoms and comorbid fibromyalgia, and with higher quality of life, whereas results for the n6:n3 ratio trended in the opposite direction.ConclusionThis population‐based study suggests that higher dietary intake of n‐3 fatty acids and lower n‐6:n‐3 ratios are favorably associated with patient‐reported outcomes in SLE, particularly self‐reported lupus activity and sleep quality.

Impact of fatigue on health-related quality of life and illness perception in a monocentric cohort of patients with systemic lupus erythematosus

BackgroundFatigue is a very common and debilitating symptom in patients with systemic lupus erythematosus (SLE), even among those with a mild or inactive disease. The objective of this study is...

Patient-Reported Outcomes Predict Mortality in Lupus.

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. 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). 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). 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.

Vicarious Racism Stress and Disease Activity: the Black Women's Experiences Living with Lupus (BeWELL) Study.

Indirect or vicarious exposure to racism (e.g., hearing about or observing acts of racism or discrimination) is a salient source of stress for African Americans. Emerging research suggests that these "secondhand" experiences of racism may contribute to racial health inequities through stress-mediated pathways. Systemic lupus erythematosus (SLE) is an inflammatory autoimmune disease that disproportionately impacts African American women and is characterized by racial disparities in severity. Health outcomes in this population may be susceptible to vicarious racism given that SLE is shown to be sensitive to psychosocial stress. Data are from 431 African American women with SLE living in Atlanta, Georgia in the Black Women's Experiences Living with Lupus (BeWELL) Study (2015-2017). Vicarious racism stress was measured with four items assessing distress from (1) hearing about racism in the news; (2) experiences of racism among friends or family; (3) witnessing racism in public; and (4) racism depicted in movies and television shows. Multivariable linear regression was used to examine associations with disease activity measured using the Systemic Lupus Activity Questionnaire. Adjusting for sociodemographic and health-related covariates, vicarious racism stress was associated with greater disease activity (b = 2.15; 95% CI = 1.04-3.27). This association persisted even after adjustment for personal experiences of racial discrimination (b = 1.80; 95% CI = 0.67-2.92). Vicarious racism may result in heightened disease activity and contribute to racial disparities in SLE. Our findings suggest that acts of racism committed against members of one's racial group may have distinct health consequences beyond the immediate victim or target.

Racial Discrimination, Disease Activity, and Organ Damage: The Black Women’s Experiences Living With Lupus (BeWELL) Study

Black women are disproportionately affected by systemic lupus erythematosus (SLE), a chronic, potentially debilitating autoimmune disease, and they also experience more rapid progression and worse outcomes compared with other groups. We examined if racial discrimination is associated with disease outcomes among 427 black women with a validated diagnosis of SLE, who live in the Atlanta, Georgia, metropolitan area, and were recruited to the Black Women's Experiences Living with Lupus Study (2015-2017). Frequency of self-reported experiences of racial discrimination in domains such as employment, housing, and medical settings was assessed using the Experiences of Discrimination measure. SLE activity in the previous 3 months, including symptoms of fatigue, fever, skin rashes, and ulcers, was measured using the Systemic Lupus Activity Questionnaire; irreversible damage to an organ or system was measured using the Brief Index of Lupus Damage. Results of multivariable linear regression analyses examining the Systemic Lupus Activity Questionnaire and log-transformed Brief Index of Lupus Damage scores indicated that increasing frequency of racial discrimination was associated with greater SLE activity (b = 2.00, 95% confidence interval: 1.32, 2.68) and organ damage (b = 0.08, 95% confidence interval: 0.02, 0.13). Comprehensive efforts to address disparities in SLE severity should include policies that address issues of racial discrimination.

Obesity is Independently Associated With Worse Patient-Reported Outcomes in Women with Systemic Lupus Erythematosus.

To determine whether obesity in women with systemic lupus erythematosus (SLE) is independently associated with worse patient-reported outcomes (PROs). Data were derived from a prospective study of adult women with a diagnosis of SLE that was verified by medical record review. Two established definitions for obesity were used: fat mass index (FMI) ≥13 kg/m2 and body mass index (BMI) ≥30 kg/m2 . Dependent variables included 4 validated PROs: disease activity as assessed by the Systemic Lupus Activity Questionnaire (SLAQ), depressive symptoms as assessed by the Center for Epidemiologic Studies Depression Scale (CES-D), pain as assessed by the Short Form 36 (SF-36) pain subscale, and fatigue as assessed by the SF-36 vitality subscale. We used multivariable linear regression to evaluate the associations of obesity with PROs, while controlling for potential confounders (age, race, education, income, smoking, disease duration, disease damage, and prednisone use). The analysis included 148 participants, 32% of whom were obese. In the multivariate regression model, obesity was associated with worse scores for each PRO. Mean adjusted scores for the SLAQ and CES-D comparing obese versus non-obese participants were 14.8 versus 11.5 (P = 0.01) and 19.8 versus 13.1 (P < 0.01), respectively. The obese group also reported worse mean adjusted scores for pain (38.7 versus 44.2; P < 0.01) and fatigue (39.6 versus 45.2; P = 0.01). In a representative sample of women with SLE, obesity (as defined by both FMI and BMI) was independently associated with worse PROs, including disease activity, depressive symptoms, and symptoms of pain and fatigue. Obesity may represent a modifiable target for improving outcomes among obese women with SLE.

Physician–patient interactions in African American patients with systemic lupus erythematosus: Demographic characteristics and relationship with disease activity and depression

ObjectiveAfrican 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. MethodsThe 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. ResultsOverall, 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). ConclusionIn 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.

External Validation of the Lupus Impact Tracker in a Southeastern US Longitudinal Cohort With Systemic Lupus Erythematosus.

To examine the external validity of the Lupus Impact Tracker (LIT), a systemic lupus erythematosus (SLE)-specific, health-related quality of life (HRQoL) tool in a population-based cohort of patients with SLE in Atlanta, Georgia. We modeled the association of LIT scores with patient-reported measures of SLE activity (Systemic Lupus Activity Questionnaire [SLAQ]) and organ damage (self-administered Brief Index of Lupus Damage [SA-BILD]). We investigated the association of LIT scores with general HRQoL using the Short Form 12 (SF-12). Correlation, multivariable regression, and longitudinal analyses using general linear modeling with fixed effects were performed to investigate the association between the LIT and patient-reported disease activity (SLAQ); patient-reported disease damage (SA-BILD); mental health (mental component summary [MCS] of the SF-12); and physical health (physical component summary [PCS] of the SF-12). Demographic trends related to the LIT were also assessed using cross-sectional analysis. The LIT was significantly associated with disease activity (SLAQ), organ damage (SA-BILD), MCS scores, and PCS scores in both adjusted and unadjusted regression analysis (P < 0.0001). Longitudinal analysis demonstrated a significant association between the LIT and disease activity (SLAQ), MCS scores, and PCS scores (P < 0.0001), but not organ damage (SA-BILD). The LIT is a simple, patient-centered tool that can be used to assess HRQoL in patients with SLE. This study provides external validity of the LIT in a population-based cohort with a large number of African American patients with a relatively high disease burden.

A comparison of patients’ and physicians’ assessments of disease activity using the Swedish version of the Systemic Lupus Activity Questionnaire

Objectives: We compared patients’ assessments of systemic lupus erythematosus (SLE) disease activity by a Swedish version of the Systemic Lupus Activity Questionnaire (SLAQ) with physicians’ assessments by the Systemic Lupus Activity Measure (SLAM) and Systemic Lupus Erythematosus Disease Activity Index 2000 (SLEDAI-2K). We also explored the performance of the SLAQ in patients with short (< 1 year) versus long (≥ 1 year) disease duration.Method: Patients filled out the SLAQ before physicians’ assessments. Correlations between SLAQ total, subscales (Symptom score, Flares, Patients global) and SLAM and SLEDAI-2K, as well as between the corresponding items in SLAQ and SLAM, were evaluated using Spearman’s ρ. Comparisons between patients with different disease durations were performed with Mann–Whitney U or chi-squared tests.Results: We included 203 patients (79% women), with a median age of 45 years [interquartile range (IQR) 33–57 years] and disease duration of 5 years (IQR 0–14 years). Correlations between physicians‘ SLAM without laboratory items (SLAM-nolab) and patients’ assessments were: SLAQ total, ρ = 0.685, Symptom score, ρ = 0.651, Flares, ρ = 0.547, and Patients global, ρ = 0.600. Of the symptom items, fatigue (ρ = 0.640), seizures (ρ = 0.635), and headache (ρ = 0.604) correlated most closely. Neurology/stroke syndrome, skin, and lymphadenopathy correlated less well (ρ < 0.24). Patients’ and physicians’ assessments were notably more discordant for patients with short disease durations.Conclusion: We confirm that the SLAQ can be used to monitor disease activity. However, the discrepancy between patients’ and physicians’ assessments was greater for patients with short versus long disease duration. We encourage further use of the SLAQ, but would like to develop a shorter version which would be valuable in modern, partly web-based, clinical care.

Perceived stress and reported cognitive symptoms among Georgia patients with systemic lupus erythematosus.

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.

Genetic risk and longitudinal disease activity in systemic lupus erythematosus using targeted maximum likelihood estimation.

Systemic lupus erythematous (SLE) is a chronic autoimmune disease associated with genetic and environmental risk factors. However, the extent to which genetic risk is causally associated with disease activity is unknown. We utilized longitudinal targeted maximum likelihood estimation to estimate the causal association between a genetic risk score (GRS) comprised of 41 established SLE variants and clinically important disease activity as measured by the validated systemic lupus activity questionnaire (SLAQ) in a multi-ethnic cohort of 942 individuals with SLE. We did not find evidence of a clinically important SLAQ score difference (> 4.0) for individuals with a high GRS compared to those with a low GRS across nine timepoints after controlling for sex, ancestry, renal status, dialysis, disease duration, treatment, depression, smoking, and education, as well as time-dependent confounding of missing visits. Individual SNP analyses revealed that 12 of the 41 variants were significantly associated with clinically relevant changes in SLAQ scores across timepoints 8 and 9 after controlling for multiple testing. Results based on sophisticated causal modeling of longitudinal data in a large patient cohort suggest that individual SLE risk variants may influence disease activity over time. Our findings also emphasize a role for other biological or environmental factors.