Use and Utility of Patient After-Visit Instructions at a University Rheumatology Outpatient Clinic: Status and Randomized Prospective Pilot Intervention Study.

OBJECTIVE: The aim of this study was to evaluate the use of after-visit instructions (AVIs) in an academic rheumatology clinic and assess the impact of standardized AVIs (sAVIs) and teach-back (TB) on comprehension of health information. METHODS: A retrospective review of adult patients seen between October 1 and 8, 2021, at the rheumatology clinic collected data on patient demographics, clinical features, and the presence, content, and readability of AVIs. During a subsequent prospective proof-of-concept study, routinely scheduled patients seen at the rheumatology clinic were randomized into three groups: control (received standard of care), received sAVIs only, and received sAVIs plus TB. Patients completed a health literacy questionnaire, satisfaction survey, and a one- to two-week postvisit telephone survey to assess AVI comprehension. RESULTS: Out of 316 retrospective patient visits, 82 (25.9%) received AVIs. Among 210 of 316 patients (66.5%) with management changes, 76 (36.1%) received AVI, with 74.2% of the instructions considered concordant with the provider's note. Use of AVIs was higher with management changes, new patient visits, and medical trainee/teaching clinics. AVIs were written at a median 6.8 grade level. A total of 75 patients completed the prospective study: 31 (41.3%) were in the control group, 19 (25.3%) were in the group that received sAVIs only, and 25 (33.3%) were in the group that received AVIs with TB. There were no differences in overall postvisit survey comprehension/retention scores among the three patient groups evaluated. CONCLUSION: Although a lack of AVI use was identified, implementation of sAVIs did not appear to impact patient retention or comprehension of discharge health information.

Does higher quality of care in systemic lupus erythematosus translate to better patient outcomes?

PURPOSE: To assess if high quality of care (QOC) in SLE results in improved outcomes of quality of life (QOL) and non-routine health care utilization (HCU). METHODS: One hundred and forty consecutive SLE patients were recruited from the Rheumatology clinic at an academic center. Data on QOC and QOL were collected along with demographics, socio-economic, and disease characteristics at baseline. LupusPRO assessing health-related (HR) QOL and non (N)HRQOL was utilized. Follow up QOL and HCU were collected prospectively at 6 months. High QOC was defined as those meeting ≥80% of the eligible quality indicators. Univariate and multivariate regression analyses were performed with QOC and high QOC as independent variables and HRQOL and NHRQOL as dependent variables at baseline and follow up. Multivariable models were adjusted for demographics and disease characteristics. Secondary outcomes included non-routine HCU and disease activity at follow up. RESULTS: Baseline and follow up data on 140 and 94 patients, respectively, were analyzed. Mean (SD) performance rate (QOC) was 78.6 (13.4) with 52% patients in the high QOC group. QOC was associated with better NHRQOL at baseline and follow up but not with HRQOL. Of all the NHRQOL domains, QOC was positively associated with treatment satisfaction. QOC or high QOC were not associated with non-routine HCU and were instead associated with higher disease activity at follow up. CONCLUSION: Higher QOC predicted better NHRQOL by directly impacting treatment satisfaction in SLE patients in this cohort. Higher QOC, however, was not associated with HRQOL, HCU, or improvement in disease activity at follow up.

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.

Assessing readability and comprehension of web-based patient education materials by American Heart Association (AHA) and CardioSmart online platform by American College of Cardiology (ACC): How useful are these websites for patient understanding?

Cardiovascular diseases (CVD) are a leading cause of morbidity & mortality worldwide. Patient education materials help patients understand the disease and its management. Health literacy is an important challenge that may contribute to health inequities and disparities. The National Institute of Health and American Medical Association recommend patient education materials to be ≤6th-grade reading level. Objective: To evaluate readability and comprehension of patient education materials related to CVD, available at the American Heart Association (AHA) & CardioSmart web platform by the American College of Cardiology (ACC) websites. Method: We examined the readability and comprehension of 63 patient education materials (accessed June 2022) using: (a) Flesch Kincaid Readability Ease (FKRE): measures readability (0-100, goal > 70), (b) Flesch Kincaid Grade Level (FKGL) (goal = grade 7). We compared the AHA and ACC scores using descriptive and t-tests. P-value ≤ 0.05 was significant. Results: Sixty-three web pages of patient education materials (AHA 24, ACC 39) were reviewed in June 2022. Mean ± standard deviation (SD) FKRE was 54.9 ± 6.8 for all the web pages. FKRE 50-60 equates to "fairly difficult to read." Mean ± SD FKGL was 10.0 ± 1.3. AHA patient education materials content was significantly more difficult to read and comprehend, were longer, and had more complex words than ACC patient education materials. Conclusions: CVD-related patient education materials available online through leading national organizations are not congruent with the recommendations from national healthcare organizations. They are not as user-friendly as they can be. Urgent recognition of the gaps and unmet needs are indicated to optimize patient health literacy.

Predictors of stress in patients with Lupus.

Background: Stress is common in patients with Systemic Lupus Erythematosus (SLE), and is associated with depression, fatigue, and disease flares. Stress may be modifiable and identifying those at high risk allows clinicians and allied health care professionals to develop a multidisciplinary management plan to direct appropriate resources. This study is aimed at identifying predictors of high stress over time among patients with SLE. Methods: Longitudinal data from two interviews of the Lupus Outcomes Study 2 years apart from 726 patients with SLE were analyzed for stress, measured using the Perceived Stress Scale (PSS; high-stress PSS ≥6). T-test and Chi-square analyses compared patient characteristics by high-stress status. Logistic regressions were conducted with high stress as the dependent variable. Covariates included demographics, disease features, quality of life (QOL), health care utilization (HCU), and comorbidities. QoL was measured using the SF-36 form (Physical Component Score, PCS; Mental Component Score, MCS) and MOS Cognitive Functioning Scale (CFS). HCU indicated having established care with a rheumatologist, use of an emergency room or hospitalization, and quality of care. P ≤ 0.05 were considered significant. Results: The mean age of the cohort was 50.6 (12.5) years, 92% were women and 68% were Caucasian. The mean (SD) PSS was 5.3 (3.6), and high stress (PSS >6) was noted in 253 participants. Those with high stress were more frequently below the poverty line and less commonly employed. They had a greater prevalence of comorbidities and HCU; and worse disease severity (activity, flare, damage) and QOL. In regression analyses, high stress (baseline) was associated with younger age, married status, worse QOL, and presence of diabetes. Better QOL (PCS, MCS) independently predicted decreased odds of high stress, while high stress (baseline) predicted high stress (OR 3.16, 95% CI 1.85, 5.37, p < 0.0001) at follow-up, after adjusting for demographics, disease features, HCU, and comorbidities. Conclusion: Patients with SLE should be routinely screened for QOL and stress during their clinical care, to identify those at risk for poor health outcomes. This information can facilitate multidisciplinary management for those at risk for worse health outcomes.

Korean LupusPRO: Cross-Cultural validation study for systemic lupus erythematosus.

OBJECTIVE: To establish the reliability and validity of the Korean version of LupusPRO version 1.7 (v1.7) for systemic lupus erythematosus (SLE) patients. METHODS: LupusPRO v1.7 was translated into Korean, followed by pretesting among five native Korean speakers. We administered the LupusPRO v1.7 survey to five SLE patients and made minor changes to clarify the language. Then, 133 SLE patients participated in the validation procedure. In each domain, the internal consistency reliability (ICR) and test-retest reliability (TRR) were assessed using Cronbach's alpha and the intra-class correlation coefficient (ICC), respectively. Criterion validity was evaluated using Spearman's correlation coefficient with the other measures such as SF-36, EQ-5D VAS, and SELENA-SLEDAI PGA. Construct validity was assessed by confirmatory factor analysis (CFA) using the unweighted least square estimation method. RESULTS: The mean age of the 133 patients was 36.14 years, and 97% of them were women. Analysis of 130 returned questionnaires revealed that most ICRs of the Korean LupusPRO v1.7 domains were acceptable, with Cronbach's alphas in the range of 0.579-0.949, and most TRRs were good with ICCs from 0.582 to 0.851. Criterion validities presented significant correlations between the LupusPRO v1.7 and other measures validated. In the analysis of the CFA model, the goodness of fit indices demonstrated an acceptable fit. Factor loadings for most individual items were between 0.548 and 0.985. The average variance extracted (AVE) and composite reliability (CR) of most domains were greater than 0.5 and 0.7, respectively, demonstrating acceptable convergent and discriminant validities. CONCLUSIONS: The Korean version of LupusPRO v.17 had acceptable reliability and validity.

Patient-Reported Outcomes in Lupus.

Patient-reported outcome (PRO) was identified as a core systemic lupus erythematosus (SLE) outcome in 1999. More than 20 years later, however, generic PRO measures evaluating impact in SLE are used mainly for research. Generic and disease-targeted PRO tools have unique advantages. Significant progress in identification of patient disease-relevant PRO concepts and development of new PRO tools for SLE has occurred over the past 20 years. Further research needs to focus on responsiveness and minimally important differences of existing, promising PRO tools to facilitate their use in SLE patient care and research.

Does hydroxychloroquine improve patient reported outcomes in patients with lupus?

BACKGROUND: Hydroxychloroquine (HCQ) use is associated with less disease activity, flares, damage and improved survival in Systemic Lupus Erythematosus (SLE). However, its effect on patient reported health outcomes (PROs) such as quality of life (QOL) is not known. METHODS: International data from Study on Outcomes of Lupus (SOUL) from 2,161 SLE patients were compared by HCQ use. Disease activity and damage were assessed using SELENA-SLEDAI and SLICC-ACR/SDI. QOL was evaluated using LupusPRO and Lupus Impact Tracker (LIT). Linear regression analyses were performed with LupusPRO summary scores health related HRQOL, non-health related NHRQOL and LIT as dependent and HCQ use as independent variable. Analyses were undertaken to test mediation of effects of HCQ use on QOL through disease activity. RESULTS: Mean age was 40.5 ± 12.8 years, 93% were women. Sixty-three (1363/2161) percent were on HCQ. On univariate analysis, HCQ use was associated with (a) better QOL (LupusPRO-HRQOL: ß 6.19, 95% CI 4.15, 8.24, P ≤ 0.001, LupusPRO NHRQOL: ß 5.83, 95% CI 4.02, 7.64, P ≤ 0.001) and less impact on daily life (LIT: ß -9.37, 95% CI -12.24, -6.50, P ≤ 0.001). On multivariate and mediational analyses, the effects of HCQ on QOL were indirectly and completely mediated through disease activity. CONCLUSIONS: HCQ use in SLE is associated with better patient reported health outcomes (LupusPRO-HRQOL and NHRQOL and impact on daily life), and the effects are mediated through disease activity. This information can facilitate patients and physician's communication with decision-making regarding the use of HCQ for SLE management.

Fatigue and its correlates in Indian patients with systemic lupus erythematosus.

Fatigue is a disabling yet poorly understood symptom in patients with systemic lupus erythematosus (SLE). Many variables influence fatigue including physical function, pain, fibromyalgia and psychiatric comorbidity. Literature is conflicted on its association with disease activity. To assess fatigue and its correlates among patients with SLE. Existent data from validation of Hindi LupusPRO study were utilized for this study. SLE patients were enrolled and underwent assessments of disease activity and damage (SELENA-SLEDAI and SLICC/ACR Damage Index (SDI)). Depression (Patient Health Questionnaire-9 (PHQ-9)), anxiety (Generalized Anxiety Disorder-7 (GAD-7)), fatigue (Fatigue Severity Scale (FSS)) and fibromyalgia were evaluated. Physical function and bodily pain were assessed using Short Form 36 (SF-36). Statistical analysis was done using the STATA version 14. A total of 140 females and 4 males with SLE with a mean age of 32.48 (SD 7.26) years were recruited. Median duration of illness was 3 years (IQR-4). Fatigue (FSS ≥ 4) was present in 74 (51.39%) participants. Prevalence of depression (PHQ-9 ≥ 10) and anxiety (GAD-7 ≥ 10) were 25% and 22.9%, respectively. Concomitant fibromyalgia was present in 8 participants (5.56%). Higher fatigue scores correlated with greater disease activity, shorter disease duration, worse physical function, bodily pain, depression and anxiety. On stepwise regression, disease duration, disease activity, bodily pain, depression and anxiety were independent predictors of fatigue (R2 = 0.35, p < 0.001). Fatigue is seen in over half of Indian patients with SLE and is independently associated with disease activity, disease duration, pain and psychiatric comorbidity. Multidisciplinary approach is indicated to address fatigue in SLE. Key Points • Fatigue is common in patients in Indian patients with SLE • Higher disease activity, shorter duration of disease, pain and psychiatric comorbidity were associated with fatigue.

Pneumococcal Vaccination Among Lupus Patients: Who Are the Recipients?

PURPOSE: Pneumococcal vaccination (PV) is indicated for the elderly (age ≥65 years) and those with chronic disease or who are immunosuppressed. We aimed to study the rate and predictors of recommendation/receipt of 23 valent pneumococcal polysaccharide vaccine (PPSV23) in immunosuppressed systemic lupus erythematosus (SLE) patients. METHODS: Data were obtained through self-report questionnaires and medical chart review of 150 SLE patients. Information on rheumatologist recommendation or receipt of PPSV23 in the preceding 5 years was collected if self-reported in a questionnaire or documented in the medical chart. Chart review was also done to collect data on patient demographics, physician characteristics (if patients had a primary care physician and rheumatologist's SLE patient volume), and the disease characteristics of SLE. Comparisons using χ2 or t tests and logistic regression analyses were conducted for predictors of recommendation/receipt of PV. RESULTS: The mean (SD) age was 47.4 (15.9) years; 90% were women. Sixty-five of 94 eligible patients for PV (based on immunosuppressive medications use or age) had been either recommended or administered PPSV23. On univariate logistic regression analysis, age, duration of disease, current use of hydroxychloroquine or mycophenolate, and rheumatologist's SLE patient volume were significant correlates of recommendation/receipt of PPSV23. However, on multivariate analysis, the only significant predictor was rheumatologist's SLE patient volume after adjusting for the above correlates such that with every 50 patients increase in SLE patient clinic volume, the odds of recommendation/receipt of PPSV23 increased by 2.37 times. CONCLUSIONS: The volume of lupus patients that rheumatologists see is strongly associated with the likelihood that their SLE patients will have PPSV23 recommended and delivered, suggesting a volume outcome relationship.

The Arabic LupusPRO: A Cross-Cultural Validation of a Disease-Specific Patient-Reported Outcome Tool for Quality of Life in Lupus Patients.

OBJECTIVE: To translate and cross-culturally adapt the Arabic version of LupusPRO v.1.8 and to test its reliability and validity. METHODS: LupusPRO was translated into the Arabic language following a standard procedure with forward-backward translation and was tested in patients with systemic lupus erythematosus (SLE) before use. The Arabic version was administered to 107 Egyptian SLE patients, along with a validated Arabic version of RAND 36-Item Health Survey 1.0 (SF-36). The internal consistency and test-retest reliability were determined. Validity was assessed by correlating LupusPRO scores with SF-36, Safety of Estrogens in Lupus Erythematosus National Assessment-Systemic Lupus Erythematosus Disease Activity Index (SELENA-SLEDAI) and Systemic Lupus International Collaborating Clinics/American College of Rheumatology Damage Index (SDI). The conceptual framework of the Arabic LupusPRO was evaluated using confirmatory factor analysis (CFA). RESULTS: Among the 107 SLE patients, 95% were women with a median (range) age of 32 (18-55) years, median (range) SELENA-SLEDAI of 6 (0-23) and median (range) SDI of 0 (0-6). The Cronbach's alpha for the Arabic LupusPRO ranged from 0.71 to 0.98, except for the social support domain (0.65). Test-retest reliability ranged from 0.95 to 0.99. Convergent validity with corresponding domains of SF 36 was satisfactory. For criterion validity, there was a weak but significant correlation between several LupusPRO domains with SELENA-SLEDAI. CFA showed a good model fit. CONCLUSION: The Arabic version of LupusPRO v1.8 is a reliable and valid tool for measuring quality of life among Arabic speaking SLE patients.

Performance and psychometric properties of lupus impact tracker in assessing patient-reported outcomes in pediatric lupus: Report from a pilot study.

OBJECTIVE: To evaluate the reliability, validity, feasibility and psychometric performance of the Lupus Impact Tracker (LIT) as a patient reported outcome (PRO) measure tool in pediatric systemic lupus erythematosus (pSLE). METHODS: This is a prospective, observational, pilot study where patients aged between 12 and 25 years, fulfilling the 1997 ACR classification criteria for SLE, were enrolled. Over 3 consecutive, routine, clinical visits, the patients completed the LIT alongside the Patient-Reported Outcomes Measurement Information System-Short Forms (PROMIS-SFs), Childhood Health Assessment Questionnaire (CHAQ). Rheumatologists completed the Systemic Lupus Erythematosus Disease Activity Index 2000 (SLEDAI-2K) and the Systemic Lupus International Collaborating Clinics/American College of Rheumatology (SLICC-ACR) Damage Index. Demographic, clinical and laboratory data were also collected. RESULTS: Of 46 patients enrolled, 38 patients completed 2 visits and 31 completed all 3 visits. Seventy-eight percent were female, 33% African American, 28% Asian, 15% Caucasian and 17% Hispanic. The mean (SD) age was 17.2 (2.7) years, with a mean (SD) disease duration of 4.6 (3.1) years. The mean (SD) SLEDAI-2K at enrollment was 3.54 (2.96). In the 38 patients who completed two or more visits, intra-class correlation coefficient and Cronbach alpha were calculated to be 0.70 and 0.91 respectively, signifying good reliability of LIT. The LIT showed positive correlation with CHAQ-Disability Index and majority of the PROMIS-SFs parameters. Construct validity was established against clinical disease activity (SLEDAI-2K). CONCLUSION: The preliminary results indicate that the LIT is a reliable and valid instrument to capture PRO in p-SLE. Prospective validation with a larger, multicenter cohort is the next step.

Longitudinal Study of Fatigue, Stress, and Depression: Role of Reduction in Stress Toward Improvement in Fatigue.

OBJECTIVE: Fatigue is common among individuals with systemic lupus erythematosus (SLE), but the causes are not well understood. Our objective was to examine perceived stress and depressive symptoms as predictors of fatigue in SLE. METHODS: Data from 2 years of the Lupus Outcomes Study (n = 650 patients), obtained through annual structured interviews, were used. Fatigue was measured with the Short Form 36 (SF-36) vitality scale along with a variety of self-report measures of disease, depression, and stress. Multivariate linear regression models examined predictors of changes in fatigue. Model 1 tested the association of time 1 (T1) depression with time 2 (T2) fatigue; model 2 added T1 perceived stress to model 1, and final models added T1-to-T2 decrease in stress. All analyses controlled for T1 fatigue, age, sex, self-report of fibromyalgia, pain, and SLE duration, activity, and damage. RESULTS: Mean ± SD age was 51 ± 12 years, 92% of participants were women, and 68% were white. The mean ± SD SF-36 fatigue score was 55 ± 24. T1 depression significantly predicted T2 fatigue. When T1 stress was added, stress (ß = 1.7 [95% confidence interval (95% CI) 1.1, 2.2]; P < 0.0001) significantly predicted T2 fatigue, but depression was no longer significant. The addition of T1-to-T2 decrease in stress was associated with a clinically meaningful decline in fatigue (ß = -11.8 [95% CI -15.6, -8.9]; P < 0.0001). CONCLUSION: While depressive symptoms initially predicted subsequent fatigue, the effects were mediated by stress. A decrease in stress, in addition, was associated with a clinically meaningful decrease in fatigue. These results suggest that perceived stress plays an important role in SLE fatigue and may be an important focus of interventions for fatigue.

Drivers of Satisfaction With Care for Patients With Lupus.

OBJECTIVE: Quality of life (QOL) and quality of care (QOC) in systemic lupus erythematosus (SLE) remains poor. Satisfaction with care (SC), a QOC surrogate, correlates with health behaviors and outcomes. This study aimed to determine correlates of SC in SLE. METHODS: A total of 1262 patients with SLE were recruited from various countries. Demographics, disease activity (modified Systemic Lupus Erythematosus Disease Activity Index for the Safety of Estrogens in Lupus Erythematosus: National Assessment trial [SELENA-SLEDAI]), and QOL (LupusPRO version 1.7) were collected. SC was collected using LupusPRO version 1.7. Regression analyses were conducted using demographic, disease (duration, disease activity, damage, and medications), geographic (eg, China vs United States), and QOL factors as independent predictors. RESULTS: The mean (SD) age was 41.7 (13.5) years; 93% of patients were women. On the univariate analysis, age, ethnicity, current steroid use, disease activity, and QOL (social support, coping) were associated with SC. On the multivariate analysis, Asian participants had worse SC, whereas African American and Hispanic patients had better SC. Greater disease activity, better coping, and social support remained independent correlates of better SC. Compared with US patients, patients from China and Canada had worse SC on the univariate analysis. In the multivariate models, Asian ethnicity remained independently associated with worse SC, even after we adjusted for geographic background (China). No associations between African American or Hispanic ethnicity and SC were retained when geographic location (Canada) was added to the multivariate model. Canadian patients had worse SC when compared with US patients. Higher disease activity, better social support, and coping remained associated with better SC. CONCLUSION: Greater social support, coping, and, paradoxically, SLE disease activity are associated with better SC. Social support and coping are modifiable factors that should be addressed by the provider, especially in the Asian population. Therefore, evaluation of a patient's external and internal resources using a biopsychosocial model is recommended. Higher disease activity correlated with better SC, suggesting that the latter may not be a good surrogate for QOC or health outcomes.

Amelioration of Autoimmune Arthritis in Mice Treated With the DNA Methyltransferase Inhibitor 5'-Azacytidine.

OBJECTIVE: Disease-associated, differentially hypermethylated regions have been reported in rheumatoid arthritis (RA), but no DNA methyltransferase inhibitors have been evaluated in either RA or any animal models of RA. The present study was conducted to evaluate the therapeutic potential of 5'-azacytidine (5'-azaC), a DNA methyltransferase inhibitor, and explore the cellular and gene regulatory networks involved in the context of autoimmune arthritis. METHODS: A disease-associated genome-wide DNA methylation profile was explored by methylated CpG island recovery assay-chromatin immunoprecipitation (ChIP) in arthritic B cells. Mice with proteoglycan-induced arthritis (PGIA) were treated with 5'-azaC. The effect of 5'-azaC on the pathogenesis of PGIA was explored by measuring serum IgM and IgG1 antibody levels using enzyme-linked immunosorbent assay, investigating the efficiency of class-switch recombination (CSR) and Aicda gene expression using real-time quantitative polymerase chain reaction, monitoring germinal center (GC) formation by immunohistochemistry, and determining alterations in B cell subpopulations by flow cytometry. The 5'-azaC-induced regulation of the Aicda gene was explored using RNA interference, ChIP, and luciferase assays. RESULTS: We explored arthritis-associated hypermethylated regions in mouse B cells and demonstrated that DNA demethylation had a beneficial effect on autoimmune arthritis. The 5'-azaC-mediated demethylation of the epigenetically inactivated Ahr gene resulted in suppressed expression of the Aicda gene, reduced CSR, and compromised GC formation. Ultimately, this process led to diminished IgG1 antibody production and amelioration of autoimmune arthritis in mice. CONCLUSION: DNA hypermethylation plays a leading role in the pathogenesis of autoimmune arthritis and its targeted inhibition has therapeutic potential in arthritis management.

Sleep Disturbance and Depression Symptoms Mediate Relationship Between Pain and Cognitive Dysfunction in Lupus.

OBJECTIVE: To determine whether sleep disturbance and symptoms of depression mediate the relationship between pain and cognitive dysfunction (CD) in a sample of 115 patients with systemic lupus erythematosus (SLE). METHODS: A total of 115 patients with SLE completed questionnaires regarding pain, perceived stress, depression, sleep, and CD. Relationships among pain, sleep, depression, and CD were assessed using bootstrap mediation models, controlling for race/ethnicity, fibromyalgia diagnosis, current corticosteroid use, disease activity and damage, and perceived stress. RESULTS: Mediation analyses indicated that the effect of pain on CD was mediated by sleep disturbance (ß = 0.30) and depression symptoms (ß = 0.33). These effects were maintained even after controlling for the aforementioned covariates, of which only disease activity (ß = 0.20) and stress (ß = 0.22) remained significantly linked to CD (overall model R2 = 0.53; all P < 0.05). CONCLUSION: After controlling for disease activity and perceived stress, the relationship between pain and CD was explained by sleep disturbance and depression symptoms. Although these relationships need validation in longitudinal studies with additional measurement modalities, our findings may indicate promising, nonpharmacologic intervention avenues for SLE patients with pain and CD. Specifically, cognitive behavioral therapies for depression and sleep are known to reduce distress and enhance functioning across various psychosocial domains. Given the symptom burden of SLE, interventions that maximize potential benefits without the use of additional pharmacologic treatments may be of particular utility.

Sex Differences in Quality of Life in Patients With Systemic Lupus Erythematosus.

OBJECTIVE: Systemic lupus erythematosus (SLE) predominantly affects women. Clinical phenotype and outcomes in SLE may vary by sex and are further complicated by unique concerns that are dependent upon sex-defined roles. We aimed to describe sex differences in disease-specific quality of life (QoL) assessment scores using the Lupus Patient-Reported Outcome (LupusPRO) tool in a large international study. METHODS: Cross-sectional data from 1,803 patients with SLE on demographics, self-identified sex status, LupusPRO, and disease activity were analyzed. The LupusPRO tool has 2 constructs: health-related QoL (HRQoL) and non-HRQoL. Disease activity and damage were evaluated using the Safety of Estrogens in Lupus Erythematosus National Assessment version of the Systemic Lupus Erythematosus Disease Activity Index and the Systemic Lupus International Collaborating Clinics/American College of Rheumatology Damage Index, respectively. Nonparametric tests were used to compare QoL and disease activity by sex. RESULTS: A total of 122 men and 1,681 women with SLE participated. The mean age was similar by sex, but the damage scores were greater among men. Men fared worse on the non-HRQoL social support domain than women (P = 0.02). When comparing disease and QoL among men and women ages ≤45 years, men were found to have greater damage and worse social support than women. However, women fared significantly worse on lupus symptoms, cognition, and procreation domains with trends for worse functioning on physical health and pain-vitality domains. CONCLUSION: In the largest study of a diverse group of SLE patients, utilizing a disease-specific QoL tool, sex differences in QoL were observed on both HRQoL and non-HRQoL constructs. Although men performed worse in the social support domain, women (especially those in the reproductive age group) fared worse in other domains. These observations may assist physicians in appropriately addressing QoL issues in a sex-focused manner.

Challenges to Practicing Rheumatology in an Academic Center.

Rheumatologists working in academics participate in patient care, teaching, and research. There are several challenges associated with the pursuit of these academic missions, and these are the focus of this article. Additionally, how financial pressures faced by academic institutions have led to greater emphasis on the generation of revenue from clinical activities to the detriment of other academic pursuits is discussed. In an era of greater physical burnout and with the looming shortages of the rheumatology workforce, the importance of addressing these issues is stressed and potential solutions discussed.

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.

A Prospective International Study on Adherence to Treatment in 305 Patients With Flaring SLE: Assessment by Drug Levels and Self-Administered Questionnaires.

Nonadherence to treatment is a major cause of lupus flares. Hydroxychloroquine (HCQ), a major medication in systemic lupus erythematosus, has a long half-life and can be quantified by high-performance liquid chromatography. This international study evaluated nonadherence in 305 lupus patients with flares using drug levels (HCQ < 200 ng/ml or undetectable desethylchloroquine), and self-administered questionnaires (MASRI < 80%). Drug levels defined 18.4% of the patients as severely nonadherent. In multivariate analyses, younger age, nonuse of steroids, higher body mass index, and unemployment were associated with nonadherence by drug level. Questionnaires classified 23.4% of patients as nonadherent. Correlations between adherence measured by questionnaires, drug level, and physician assessment were moderate. Both methods probably measured two different patterns of nonadherence: self-administered questionnaires mostly captured relatively infrequently missed tablets, while drug levels identified severe nonadherence (i.e., interruption or erratic tablet intake). The frequency with which physicians miss nonadherence, together with underreporting by patients, suggests that therapeutic drug monitoring is useful in this setting. (Trial registration: ClinicalTrials.gov: NCT01509989.).