Positive psychosocial factors may protect against perceived stress in people with systemic lupus erythematosus with and without trauma history.

OBJECTIVE: Trauma history is associated with SLE onset and worse patient-reported outcomes; perceived stress is associated with greater SLE disease activity. Stress perceptions vary in response to life events and may be influenced by psychosocial factors. In an SLE cohort, we examined whether stressful events associated with perceived stress, whether psychosocial factors affected perceived stress, and whether these relationships varied by prior trauma exposure. METHODS: This is a cross-sectional analysis of data from the California Lupus Epidemiology Study, an adult SLE cohort. Multivariable linear regression analyses controlling for age, gender, educational attainment, income, SLE damage, comorbid conditions, glucocorticoids ≥7.5 mg/day and depression examined associations of recent stressful events (Life Events Inventory) and positive (resilience, self-efficacy, emotional support) and negative (social isolation) psychosocial factors with perceived stress. Analyses were stratified by lifetime trauma history (Brief Trauma Questionnaire (BTQ)) and by adverse childhood experiences (ACEs) in a subset. RESULTS: Among 242 individuals with SLE, a greater number of recent stressful events was associated with greater perceived stress (beta (95% CI)=0.20 (0.07 to 0.33), p=0.003). Positive psychosocial factor score representing resilience, self-efficacy and emotional support was associated with lower perceived stress when accounting for number of stressful events (-0.67 (-0.94 to -0.40), p<0.0001); social isolation was associated with higher stress (0.20 (0.14 to 0.25), p<0.0001). In analyses stratified by BTQ trauma and ACEs, associations of psychosocial factors and perceived stress were similar between groups. However, the number of recent stressful events was significantly associated with perceived stress only for people with BTQ trauma (0.17 (0.05 to 0.29), p=0.0077) and ACEs (0.37 (0.15 to 0.58), p=0.0011). CONCLUSION: Enhancing positive and lessening negative psychosocial factors may mitigate deleterious perceived stress, which may improve outcomes in SLE, even among individuals with a history of prior trauma who may be more vulnerable to recent stressful events.

Fluid Cognition Among Individuals With Systemic Lupus Erythematosus.

OBJECTIVE: We sought to describe fluid cognition and its correlates among individuals with systemic lupus erythematosus (SLE). METHODS: Participants (n = 199) were recruited from a population-based cohort for a single study visit (October 2019 to May 2022). Fluid cognition was measured via the National Institutes of Health Toolbox Fluid Cognition Battery (including episodic memory, working memory, attention and inhibitory control, processing speed, and cognitive flexibility domains) and expressed as age-corrected standard scores (mean 100, SD 15). Potential impairment was defined as a standard score >1.5 SD below the mean. Descriptive statistics were calculated and associations of various participant characteristics with the potential fluid cognition impairment were assessed with multivariable logistic regression. RESULTS: Participants' mean age was 46.1 years; most were female (87.4%), Black (86.4%), and non-Hispanic (95.0%). The mean overall fluid cognition score was 87.2; of the individual domains, the participants' mean score was lowest on attention and inhibitory control (82.0). Working status (odds ratio [OR] 0.30, 95% confidence interval [CI] 0.14-0.64) and higher self-reported physical functioning (OR 0.46, 95% CI 0.28-0.75) and physical performance (OR 0.72, 95% CI 0.59-0.87) were associated with lower odds of fluid cognition impairment; lower educational attainment was associated with higher odds (OR 3.82, 95% CI 1.67-8.75). Self-reported forgetfulness, neuropsychiatric damage, and depressive symptoms were not statistically significantly associated with potential impairment. CONCLUSION: Fluid cognition and, particularly, attention and inhibitory control were low in those with SLE relative to the general US population. Working status, higher physical functioning and performance, and higher educational attainment were associated with lower prevalence of potential impairment. Future work is needed to develop and implement interventions to help support cognition in individuals with SLE.

Economic insecurities and patient-reported outcomes in patients with systemic lupus erythematosus in the USA: a cross-sectional analysis of data from the California Lupus Epidemiology Study.

BACKGROUND: Social determinants of health are consistently associated with systemic lupus erythematosus (SLE) outcomes. However, social determinants of health are typically measured with conventional socioeconomic status factors such as income or education. We assessed the association of economic insecurities (ie, food, housing, health care, and financial insecurity) with patient-reported outcomes in a cohort of patients with SLE. METHODS: In this cross-sectional analysis, data were derived from the California Lupus Epidemiology Study based in the San Francisco Bay Area, CA, USA. Participants were recruited between Feb 25, 2015, and Jan 10, 2018, from rheumatology clinics. Inclusion criteria were Bay Area residency; oral fluency in English, Spanish, Cantonese, or Mandarin; 18 years or older; ability to provide informed consent; and a physician confirmed SLE diagnosis. Food, housing, health care, and financial economic insecurities were assessed by validated screening tools. Patient-reported outcomes were obtained using PROMIS, Quality of Life in Neurological Disorders (known as Neuro-QoL) Cognitive Function short form, Patient Health Questionnaire (PHQ)-8, and General Anxiety Disorder (GAD)-7 instruments. Poverty was defined as household income of 125% or less of the federal poverty limit. Lower education was defined as less than college-graduate education. The association of economic insecurities with patient-reported outcomes was assessed by multivariable linear regression models adjusting for demographics, SLE disease characteristics, and comorbidities. We tested for interactions of insecurities with poverty and education. FINDINGS: The final cohort included 252 participants. Mean age was 49·7 (SD 13·4) years, 228 (90%) of 252 were women and 24 (10%) were men. 80 (32%) individuals self-identified as Asian, 26 (10%) as Black, 101 (40%) as White, eight (3%) as mixed race, and 37 (15%) as other race; 59 (23%) self-identified as Hispanic. 135 (54%) individuals had at least one insecurity. Insecurities were highly prevalent, and more common in those with poverty and lower education. Adjusted multivariate analyses revealed that participants with any insecurity had significantly worse scores across all measured patient-reported outcomes. For physical function, no insecurity had an adjusted mean score of 48·9 (95% CI 47·5-50·3) and any insecurity had 45·7 (44·3-47·0; p=0·0017). For pain interference, no insecurity was 52·0 (50·5-53·5) and any insecurity was 54·4 (53·0-55·8; p=0·031). For fatigue, no insecurity was 50·5 (48·8-52·3) and any insecurity was 54·9 (53·3-56·5; p=0·0005). For sleep disturbance, no insecurity was 49·9 (48·3-51·6) and any insecurity was 52·9 (51·4-54·5; p=0·012). For cognitive function, no insecurity was 49·3 (47·7-50·9) and any insecurity was 45·6 (44·1-47·0; p=0·0011). For PHQ-8, no insecurity was 4·4 (3·6-5·1) and any insecurity was 6·1 (5·4-6·8; p=0·0013). For GAD-7, no insecurity was 3·3 (2·6-4·1) and any insecurity was 5·2 (4·5-5·9; p=0·0008). Individuals with more insecurities had worse patient-reported outcomes. There were no statistically significant interactions between insecurities and poverty or education. INTERPRETATION: Having any economic insecurity was associated with worse outcomes for people with SLE regardless of poverty or education. The findings of this study provide insight into the relationship between economic insecurities and SLE outcomes and underscore the need to assess whether interventions that directly address these insecurities can reduce health disparities in SLE. FUNDING: US Centers for Disease Control, Rheumatology Research Foundation, and National Institute of Arthritis and Musculoskeletal and Skin Diseases.

Development of the American College of Rheumatology Patient-Reported Outcome Quality Measures for Systemic Lupus Erythematosus.

OBJECTIVE: As part of a Centers for Disease Control and Prevention-funded American College of Rheumatology (ACR) initiative, we sought to develop quality measures related to Patient Reported Outcome Measure (PROM) use for systemic lupus erythematosus (SLE) clinical care. METHODS: An expert workgroup composed of physician, patient, and researcher representatives convened to identify patient-reported outcome (PRO) domains of greatest importance to people with SLE. A patient advisory panel separately ranked domains. PROMs assessing priority domains were identified through structured literature review, and detailed psychometric reviews were conducted for each PROM. In a Delphi process, the expert workgroup rated PROMs on content validity, psychometric quality, feasibility of implementation, and importance for guiding patient self-management. The patient advisory panel reviewed PROMs in parallel and contributed to the final recommendations. RESULTS: Among relevant PRO domains, the workgroup and patient partners ranked depression, physical function, pain, cognition, and fatigue as high-priority domains. The workgroup recommended at least once yearly measurement for (1) assessment of depression using the Patient Health Questionnaire or Patient Reported Outcomes Measurement Information System (PROMIS) depression scales; (2) assessment of physical function using PROMIS physical function scales or the Multi-Dimensional Health Assessment Questionnaire; and (3) optional assessments of fatigue and cognition. Pain scales evaluated were not found to be sufficiently superior to what is already assessed in most SLE clinic visits. CONCLUSION: Expert workgroup members and patient partners recommend that clinicians assess depression and physical function at least once yearly in all people with SLE. Additional PROMs addressing cognition and fatigue can also be assessed. Next steps are to incorporate PROM-based quality measures into the ACR The Rheumatology Informatics System for Effectiveness registry.

Racial and Ethnic Differences in a Biochemical Marker of Rheumatoid Arthritis Disease Activity.

OBJECTIVE: Racial and ethnic disparities in rheumatoid arthritis (RA) disease activity measures have been documented. We compared racial and ethnic differences in disease activity using multiple composite measures, including an objective measure, the multi-biochemical disease activity (MBDA) score. METHODS: Data are derived from the University of California, San Francisco RA Cohort, a longitudinal observational cohort. Participants with at least one MBDA measure and self-reported race and ethnicity were included. Multivariable linear regression evaluated the association between race and ethnicity groups and mean MBDA score, adjusting for potential confounders, including symptom duration and medication use. Sensitivity analyses substituted the Clinical Disease Activity Index (CDAI) and the Disease Activity Score-28 joints with erythrocyte sedimentation rate (DAS28-ESR) for the MBDA in multivariable models. RESULTS: We included 267 participants (86% female, mean age 52.7 ± 13.3 years). The majority were Latinx (n = 137; 51%), followed by Asian (n = 91; 34%). After adjustment, Latinx participants had the highest mean MBDA score (40.6 ± 2.1) compared with White participants at (32.8 ± 6.7). Black participants had the second highest mean MBDA score, followed by Asian participants (36.3 ± 5.3, 36.0 ± 2.7, respectively), although neither were significantly different from White participants. The trends observed for the CDAI and DAS28-ESR were similar to those for the MBDA. CONCLUSION: We found significantly higher disease activity measured by the MBDA and DAS28-ESR in Latinx participants compared with White participants. We also found significantly higher disease activity in Asian participants compared with White participants with the DAS28-ESR. Our findings, although limited by the small number of White participants in the referent group, suggest that RA disease activity measures may be influenced by external factors that have differential impacts by racial and ethnic group.

Depressive symptoms in lung transplant recipients: trajectory and association with mortality and allograft dysfunction.

OBJECTIVE: Most studies observing an association between depressive symptoms following lung transplantation and mortality are limited to depressive symptom measurement at a single time point, unrelated to allograft function. We aimed to test the association of depressive symptoms over multiple assessments with allograft dysfunction and with mortality. METHODS: We assessed depressive symptoms before and serially up to 3 years after lung transplantation in lung transplant recipients. We quantified depressive symptoms with the Geriatric Depression Scale (GDS; range 0-15; minimally important difference (MID): 2). We quantified changes in GDS using linear mixed effects models and tested the association with mortality using Cox proportional hazards models with GDS as a time-dependent predictor. To determine if worsening in GDS preceded declines in lung function, we tested the association of GDS as a time-dependent predictor with the lagged outcome of FEV1 at the following study visit. RESULTS: Among 266 participants, depressive symptoms improved early after transplantation. Worsening in post-transplant GDS by the MID was associated with mortality (HR 1.25, 95% CI 1.05 to 1.50), and in lagged outcome analyses with decreased per cent predicted FEV1 (Δ, -1.62%, 95% CI -2.49 to -0.76). Visual analyses of temporal changes in GDS demonstrated that worsening depressive symptoms could precede chronic lung allograft dysfunction. CONCLUSIONS: Depressive symptoms generally improve after lung transplantation. When they worsen, however, there is an association with declines in lung function and mortality. Depression is one of the few, potentially modifiable, risk factors for chronic lung allograft dysfunction and death.

Low cumulative disease activity is associated with higher bone mineral density in a majority Latinx and Asian US rheumatoid arthritis cohort.

OBJECTIVE: Prior studies have found conflicting results when evaluating the association between rheumatoid arthritis (RA) disease activity and bone mineral density (BMD). Whether or not cumulative RA disease activity is associated with BMD remains unanswered. METHODS: Data were from the University of California San Francisco RA Cohort from years 2006-2018. Those with BMD measures and at least two study visits prior to BMD measure were included in the study. The association between low cumulative disease activity, as measured by DAS28ESR, with the primary outcome of femoral neck BMD was assessed using multivariable linear regression. Sensitivity analyses were performed substituting CDAI for the disease activity measure as well as total hip and lumbar spine BMD as outcomes. RESULTS: 161 participants with RA were studied. The cohort was 62.4 ± 10.2 years old and 88% female. Hispanic/Latino (N = 73, 45%) and Asian (N = 59, 37%) were the most common racial/ethnic groups in our cohort. Mean RA duration was 10.5 ± 7.3 years and 83% were ACPA positive. Low disease activity was independently associated with higher femoral neck BMD compared to the moderate/high disease activity group (ß= 0.071 [95%CI: 0.021 to 0.122], p = 0.020). The relationship between low cumulative disease activity was similar when CDAI and other BMD sites were substituted in the multivariable models. CONCLUSION: Low cumulative disease activity as measured by DAS28ESR was associated with higher femoral neck BMD, independent of traditional osteoporosis risk factors (e.g., age, sex, BMI) in a unique RA cohort. Results were similar when evaluating cumulative low CDAI and other BMD sites.

Patient-reported functional outcomes 30 days after hospitalization for COVID-19.

BACKGROUND: Many coronavirus disease 2019 (COVID-19) survivors experience persistent symptoms, such as fatigue, dyspnea, and musculoskeletal pain. However, less is known about the impact of COVID-19 on longer term functional outcomes. OBJECTIVE: To evaluate patient-reported activity of daily living (ADL) function and fatigue symptoms 30 days after hospitalization for COVID-19. DESIGN: Cross-sectional study. SETTING: Tertiary care university hospital. PARTICIPANTS: Adults 18 years or older hospitalized for COVID-19 and survived to 30 days after discharge. METHODS: A standardized telephone questionnaire was administered 30 days after hospital discharge. MAIN OUTCOME MEASURES: Ability to perform basic and instrumental ADLs and fatigue symptoms severity (Patient-Reported Outcome Measurement Information System [PROMIS] Fatigue Short Form 7a) were assessed by self-report. RESULTS: Participants (n = 55) were 22-95 years old. Compared to pre-COVID hospitalization, 52% developed new difficulty and 6% new dependence with performing basic ADLs (bADLs), 48% developed new difficulty and 11% new dependence with instrumental ADLs (iADLs), and 69% experienced a clinically significant worsening in their fatigue symptom severity. The average fatigue symptom severity T-score before hospitalization was 44.2 ± 7.4 and after hospitalization was 54.5 ± 9.8. In exploratory multivariate analyses, each additional COVID symptom at presentation was associated with a predicted increase of 1.43 units (95% confidence interval [CI], 0.45-2.42) in the 30-day fatigue symptom severity T-score, each additional day of hospitalization was associated with an 1.2 times increased odds of worsening fatigue (95% CI, 0.98-1.5; p = .08), and each unit increase in baseline body mass index was associated with 0.8 times decreased odds of new bADL or iADL dependence at 30 days (95% CI, 0.65-0.99). CONCLUSIONS: New functional impairments are common at 30 days after discharge among survivors of hospitalization for COVID-19. Early rehabilitation, advance care planning, and referrals to appropriate therapies should be considered in postacute COVID-19 care to maximize patients' functional outcomes. However, ongoing research is still needed regarding management of these patients.

Construct and Predictive Validity of Sarcopenia in Lung Transplant Candidates.

Rationale: Sarcopenia is associated with disability and death. The optimal definition and clinical relevance of sarcopenia in lung transplantation remain unknown. Objectives: To assess the construct and predictive validity of sarcopenia definitions in lung transplant candidates. Methods: In a multicenter prospective cohort of 424 lung transplant candidates, we evaluated limited (muscle mass only) and expanded (muscle mass and quality) sarcopenia definitions from the European Working Group on Sarcopenia in Older People 2 (EWGSOP2), the Foundation for the National Institutes of Health (FNIH), and a cohort-specific distribution-based lowest quartile definition. We assessed construct validity using associations with conceptually related factors. We evaluated the relationship between sarcopenia and frailty using generalized additive models. We also evaluated associations between sarcopenia definitions and key pretransplant outcomes, including disability (quantified by the Lung Transplant Valued Life Activities scale [range, 0-3; higher scores = worse disability; minimally important difference, 0.3]) and waitlist delisting/death, by multivariate linear and Cox regression, respectively. Results: Sarcopenia prevalence ranged from 6% to13% by definition used. The limited EWGSOP2 definition demonstrated the highest construct validity, followed by the expanded EWGSOP2 definition and both limited and expanded FNIH and lowest quartile definitions. Sarcopenia exhibited a linear association with the risk of frailty. The EWGSOP2 and expanded lowest quartile definitions were associated with disability, ranging from 0.20 to 0.25 higher Lung Transplant Valued Life Activities scores. Sarcopenia was associated with increased risk of waitlist delisting or death by the limited and expanded lowest quartile definitions (hazard ratio [HR], 3.8; 95% confidence interval [CI], 1.4-9.9 and HR, 3.5; 95% CI, 1.1-11.0, respectively) and the EWGSOP2 limited definition (HR, 2.8; 95% CI, 0.9-8.6) but not with the three other candidate definitions. Conclusions: The prevalence and validity of sarcopenia vary by definition; the EWGSOP2 limited definition exhibited the broadest validity in lung transplant candidates. The linear relationship between low muscle mass and frailty highlights sarcopenia's contribution to frailty and also questions the clinical utility of a sarcopenia cut-point in advanced lung disease. The associations between sarcopenia and important pretransplant outcomes support further investigation into using body composition for candidate risk stratification.

Primary graft dysfunction attenuates improvements in health-related quality of life after lung transplantation, but not disability or depression.

Disability, depressive symptoms, and impaired health-related quality of life (HRQL) are common among patients with life-threatening respiratory compromise. We sought to determine if primary graft dysfunction (PGD), a syndrome of acute lung injury, attenuates improvements in patient-reported outcomes after transplantation. In a single-center prospective cohort, we assessed disability, depressive symptoms, and HRQL before and at 3- to 6-month intervals after lung transplantation. We estimated the magnitude of change in disability, depressive symptoms, and HRQL with hierarchical segmented linear mixed-effects models. Among 251 lung transplant recipients, 50 developed PGD Grade 3. Regardless of PGD severity, participants had improvements in disability and depressive symptoms, as well as generic-physical, generic-mental, respiratory-specific, and health-utility HRQL, exceeding 1- to 4-fold the minimally clinically important difference across all instruments. Participants with PGD Grade 3 had a lower magnitude of improvement in generic-physical HRQL and health-utility than in all other participants. Among participants with PGD Grade 3, prolonged mechanical ventilation was associated with greater attenuation of improvements. PGD remains a threat to the 2 primary aims of lung transplantation, extending survival and improving HRQL. Attenuation of improvement persists long after hospital discharge. Future studies should assess if interventions can mitigate the impact of PGD on patient-reported outcomes.

Sex differences in frailty and its association with low bone mineral density in rheumatoid arthritis.

OBJECTIVES: Frailty in the general population is associated with poor health outcomes including low bone mass and osteoporotic fracture. The relationship between frailty and low bone mineral density (BMD) in rheumatoid arthritis (RA) is unknown. This study examined associations between frailty and BMD in RA, controlling for established osteoporosis risk factors. METHODS: We performed a cross-sectional analysis of a longitudinal RA cohort (n = 138; 117 female, 21 male). Participants fulfilled ACR RA classification criteria. Frailty was evaluated using the Fried Index, categorizing each participant as robust, pre-frail or frail. To identify independent predictors of BMD, we performed a multivariable linear regression analysis. Because risk factors for low BMD differ between sexes, we performed additional sex-stratified multivariable analyses. RESULTS: Mean age and disease duration were 58.0 ± 10.8 and 19 ± 10.9 years, respectively. The majority of participants were categorized as pre-frail (70%) or frail (10%). Females had higher rates of frailty than males. In the whole cohort, both pre-frail and frail had independent negative associations with BMD (ß = -0.074 and -0.092 respectively, p < 0.05). In sex-stratified analyses, frailty did not have a significant association with BMD in females, but had a strong independent negative association in males (ß = -0.247, p = 0.001). CONCLUSION: Frailty was associated with BMD in patients with RA. Females had higher rates of frailty than males, yet frailty was independently associated with BMD in males but not in females. Frailty appears to be an important factor associated with low BMD; sex may influence this relationship in RA.

Frailty after lung transplantation is associated with impaired health-related quality of life and mortality.

BACKGROUND: Lung transplantation and related medications are associated with pathobiological changes that can induce frailty, a state of decreased physiological reserve. Causes of persistent or emergent frailty after lung transplantation, and whether such transplant-related frailty is associated with key outcomes, are unknown. METHODS: Frailty and health-related quality of life (HRQL) were prospectively measured repeatedly for up to 3 years after lung transplantation. Frailty, quantified by the Short Physical Performance Battery (SPPB), was tested as a time-dependent binary and continuous predictor. The association of transplant-related frailty with HRQL and mortality was evaluated using mixed effects and Cox regression models, respectively, adjusting for age, sex, ethnicity, diagnosis, and for body mass index and lung function as time-dependent covariates. We tested the association between measures of body composition, malnutrition, renal dysfunction and immunosuppressants on the development of frailty using mixed effects models with time-dependent predictors and lagged frailty outcomes. RESULTS: Among 259 adults (56% male; mean age 55.9±12.3 years), transplant-related frailty was associated with lower HRQL. Frailty was also associated with a 2.5-fold higher mortality risk (HR 2.51; 95% CI 1.21 to 5.23). Further, each 1-point worsening in SPPB was associated, on average, with a 13% higher mortality risk (HR 1.13; 95% CI 1.04 to 1.23). Secondarily, we found that sarcopenia, underweight and obesity, malnutrition, and renal dysfunction were associated with the development of frailty after transplant. CONCLUSIONS: Transplant-related frailty is associated with lower HRQL and higher mortality in lung recipients. Abnormal body composition, malnutrition and renal dysfunction may contribute to the development of frailty after transplant. Confirming the role of these potential contributors and developing interventions to mitigate frailty may improve lung transplant success.

Patient and clinician perspectives on a patient-facing dashboard that visualizes patient reported outcomes in rheumatoid arthritis.

BACKGROUND: Poor patient-clinician communication around patient-reported outcomes (PROs) is a barrier to the effective management of rheumatoid arthritis (RA). We aimed to develop an RA 'dashboard' that could facilitate conversations about PROs and that would be acceptable to a wide range of patients, including English and Spanish speakers and patients with adequate or limited health literacy. METHODS: A diverse group of RA patients along with clinicians from two academic rheumatology clinics joined separate focus groups. We solicited feedback and made iterative changes to mock-ups of an RA dashboard that visualized PROs using a human-centred design process. We used the thematic analysis method to identify and characterize themes from the focus groups and used these insights to refine the dashboard. RESULTS: We conducted six focus groups involving 25 RA patients and three groups with 11 clinicians. Patients and clinicians agreed that the dashboard could enhance communication about PROs and RA disease activity and could promote patient self-management. Patients varied in their (a) comprehension, (b) preferences for the display and features of the dashboard, and (c) desired uses for the dashboard. Clinicians expressed significant concerns about the logistics of using the dashboard in clinical practice. CONCLUSION: Using principles of human-centred design, we created an RA dashboard that was well-accepted among patients and clinicians. The ability to customize the data display is important for tailoring the dashboard to patients with diverse needs and preferences. Special attention should be given to feasibility concerns voiced by clinicians.

Quality of Care for the Screening, Diagnosis, and Management of Lupus Nephritis Across Multiple Health Care Settings.

OBJECTIVE: We examined quality measures for screening, diagnosis, and treatment of lupus nephritis (LN) among participants of the California Lupus Epidemiology Study across 25 different clinical sites to identify gaps in quality of care. METHODS: Data from 250 participants with lupus were analyzed across 3 sources (medical records, physician examination, and patient interviews). Overall performance on 8 quality measures was calculated separately for participants with and without LN. We used generalized estimating equations in which the outcome was performance on measures, adjusting for participant demographics, lupus disease severity, and practice characteristics. RESULTS: Of 148 patients without LN, 42% underwent screening laboratory tests for nephritis, 38% underwent lupus activity serum studies, and 81% had their blood pressure checked every 6 months. Of 102 LN patients, 67% had a timely kidney biopsy, at least 81% had appropriate treatment, and 78% achieved target blood pressure within 1 year of diagnosis. Overall performance in participants across quality measures was 54% (no LN) and 80% (LN). Significantly higher overall performance for screening measures for LN was seen at academic (63.4-73%) versus community clinics (37.9-38.4%). Similarly, among those with LN, higher performance in academic (84.1-85.2%) versus community clinics (54.8-60.2%) was observed for treatment measures. CONCLUSION: In this quality-of-care analysis across 25 diverse clinical settings, we found relatively high performance on measures for management of LN. However, future work should focus on bridging the gaps in lupus quality of care for patients without nephritis, particularly in community settings.

Relationships Between Adverse Childhood Experiences and Health Status in Systemic Lupus Erythematosus.

OBJECTIVE: Adverse childhood experiences (ACEs) are associated with poor adult health and immune dysregulation. The impact of ACEs on patients with autoimmune disease is unknown. The present study was undertaken to compare the prevalence of ACEs in patients with systemic lupus erythematosus (SLE) to a population-based survey estimate and to investigate relationships between ACEs and SLE outcomes. METHODS: Data derived from the California Lupus Epidemiology Study (CLUES), a sample of adult patients with SLE. Participants completed a 10-item ACE questionnaire covering 3 domains (abuse, neglect, household challenges). We estimated ACE prevalence in 269 CLUES participants compared to geographically matched respondents from the 2015 California Behavioral Risk Factor Surveillance System (BRFSS), which was standardized to CLUES participant characteristics (age, sex, race/ethnicity). We examined associations of patient-reported and physician-assessed health status measures with overall ACE levels and domains using multivariable linear regression, controlling for sociodemographics, nephritis, and juvenile-onset SLE. RESULTS: Although specific domains varied, overall ACE levels were similar for CLUES and BRFSS respondents. Among SLE patients, 63.2% had ≥1 ACE, and 19.3% had ≥4. ACEs were more prevalent in those who were older, women, Latino or African American, and without college degrees, but not in those with lupus nephritis. In adjusted models, higher ACE levels and ACE domains were associated with worse patient-reported SLE activity, depression, and health status but were not significantly associated with physician-assessed SLE activity, damage, or severity. CONCLUSION: Given the association between ACE levels and important patient-reported outcomes in SLE, our study reinforces the need for prevention of ACEs in childhood and for clinical interventions to promote resilience among adults who have experienced ACEs.

The Impact of Frailty on Changes in Physical Function and Disease Activity Among Adults With Rheumatoid Arthritis.

OBJECTIVE: Reduced physical function and frailty are common in rheumatoid arthritis (RA). However, relationships between frailty and changes in physical function and disease activity over time in RA are unknown. We tested whether frailty is a risk factor for worsening patient-reported physical function and disease activity in RA. METHODS: Adults from a longitudinal RA cohort (N = 124) participated. By using an established frailty definition, individuals with three or more of the following deficits were considered frail: 1) body mass index less than or equal to 18.5, 2) low grip strength, 3) severe fatigue, 4) slow 4-m walking speed, and 5) low physical activity. Individuals with one to two or zero deficits were considered "pre-frail" or "robust," respectively. Physical function and RA disease activity were assessed by the Health Assessment Questionnaire (HAQ) and Rheumatoid Arthritis Disease Activity Index (RADAI), respectively, at baseline and follow-up 2 years later. Regression analyses modeled associations of frailty status with change in HAQ and RADAI scores between baseline and follow-up with and without controlling for covariates. Associations of individual frailty components with change in HAQ and RADAI scores were also examined. RESULTS: Among adults with RA, baseline frailty status predicted significant increases, or worsening, in HAQ (ß: 0.4; 95% confidence interval: 0.1-0.8; P < 0.01) but not RADAI scores (ß: 0.5; 95% confidence interval: -0.4 to 1.5; P > 0.05) between baseline and follow-up in fully adjusted models. Fatigue was an important contributor to this effect. CONCLUSION: Frailty may be an important risk factor for reduced physical function over time in RA. Future studies should address whether interventions to reduce frailty improve physical function in RA.

Effects of Language, Insurance, and Race/Ethnicity on Measurement Properties of the PROMIS Physical Function Short Form 10a in Rheumatoid Arthritis.

OBJECTIVE: Most studies that have evaluated patient-reported outcomes, such as those utilizing the Patient-Reported Outcomes Measurement Information System (PROMIS) Physical Function Short Form 10a (PF10a) in rheumatoid arthritis (RA), have been performed in white and English-speaking populations. The aim of our study was to assess the measurement properties of the PF10a in a racially/ethnically diverse population with RA and to determine the effect of non-English language proficiency, insurance status, and race/ethnicity on the validity and responsiveness of the PF10a. METHODS: Data were abstracted from electronic health records for all RA patients seen in a university-based rheumatology clinic between 2013 and 2017. We evaluated the use of the PF10a, floor and ceiling effects, and construct validity across categories of language preference, insurance, and race/ethnicity. We used standardized response means and linear mixed-effects models to evaluate the responsiveness of the PF10a to longitudinal changes in the Clinical Disease Activity Index (CDAI) across population subgroups. RESULTS: We included 595 patients in a cross-sectional analysis of validity and 341 patients in longitudinal responsiveness analyses of the PF10a. The PF10a had acceptable floor and ceiling effects and was successfully implemented. We observed good construct validity and responsiveness to changes in CDAI among white subjects, English speakers, and privately insured patients. However, constructs evaluated by the PF10a were less correlated with clinical measures among Chinese speakers and Hispanic subjects, and less sensitive to clinical improvements among Medicaid patients and Spanish speakers. CONCLUSION: While the PF10a has good measurement properties and is both practical and acceptable for implementation in routine clinical practice, we also found important differences across racial/ethnic groups and those with limited English proficiency that warrant further investigation.

Symptoms of Anxiety and Depression Among Adults with Arthritis - United States, 2015-2017.

An estimated 54.4 million (22.7%) U.S. adults have doctor-diagnosed arthritis (1). A report in 2012 found that, among adults aged ≥45 years with arthritis, approximately one third reported having anxiety or depression, with anxiety more common than depression (2). Studies examining mental health conditions in adults with arthritis have focused largely on depression, arthritis subtypes, and middle-aged and older adults, or have not been nationally representative (3). To address these knowledge gaps, CDC analyzed 2015-2017 National Health Interview Survey (NHIS) data* to estimate the national prevalence of clinically relevant symptoms of anxiety and depression among adults aged ≥18 years with arthritis. Among adults with arthritis, age-standardized prevalences of symptoms of anxiety and depression were 22.5% and 12.1%, respectively, compared with 10.7% and 4.7% among adults without arthritis. Successful treatment approaches to address anxiety and depression among adults with arthritis are multifaceted and include screenings, referrals to mental health professionals, and evidence-based strategies such as regular physical activity and participation in self-management education to improve mental health.

Patient-reported outcome measures for use in clinical trials of SLE: a review.

Inclusion of patient-reported outcomes is important in SLE clinical trials as they allow capture of the benefits of a proposed intervention in areas deemed pertinent by patients. We aimed to compare the measurement properties of health-related quality of life (HRQoL) measures used in adults with SLE and to evaluate their responsiveness to interventions in randomised controlled trials (RCTs). A systematic review was undertaken using full original papers in English identified from three databases: MEDLINE, EMBASE and PubMed. Studies describing the validation of HRQoL measures in English-speaking adult patients with SLE and SLE drug RCTs that used an HRQoL measure were retrieved. Twenty-five validation papers and 26 RCTs were included in the indepth review evaluating the measurement properties of 4 generic (Medical Outcomes Study Short-Form 36 (SF36), Patient Reported Outcomes Measurement Information System (PROMIS) item-bank, EuroQol-5D, and Functional Assessment of Chronic Illness Therapy-Fatigue) and 3 disease-specific (Lupus Quality of Life (LupusQoL), Lupus Patient Reported Outcomes, Lupus Impact Tracker (LIT)) instruments. All measures had good convergent and discriminant validity. PROMIS provided the strongest evidence for known-group validity and reliability among generic instruments; however, data on its responsiveness have not been published. Across measures, standardised response means were generally indicative of poor-moderate sensitivity to longitudinal change. In RCTs, clinically important improvements were reported in SF36 scores from baseline; however, between-arm differences were frequently non-significant and non-important. SF36, PROMIS, LupusQoL and LIT had the strongest evidence for acceptable measurement properties, but few measures aside from the SF36 have been incorporated into clinical trials. This review highlights the importance of incorporating a broader range of SLE-specific HRQoL measures in RCTs and warrants further research that focuses on longitudinal responsiveness of newer instruments.