Efficacy of lifestyle interventions in the management of systemic lupus erythematosus: a systematic review of the literature.

We performed a systematic review to explore existing evidence regarding the efficacy of lifestyle interventions for the management of systemic lupus erythematosus (SLE). The search was conducted on the 22nd of June 2021 for publications between 1st of January 2000 and the date of search. Additional articles within the aforementioned timeframe and until December 2023 were added by hand searching. Databases utilized were Medline, Embase, Web of Science, and Cinahl. Lifestyle interventions were defined as any intervention encompassing one or more of the following: physical exercise, diet and nutrition, mental health, harmful exposures, sleep, and social relations. The Joanna Briggs Institute critical appraisal tools were used for risk of bias assessment. The search yielded 11,274 unique records, we assessed the full text of 199 records, and finally included 102 studies. Overall, the quality of the evidence is limited, and there were multiple sources of heterogeneity. The two domains most extensively researched were mental health (40 records) and physical exercise (39 records). Psychological interventions had a positive effect on depressive symptoms, anxiety, and health-related quality of life (HRQoL), whereas physical exercise improved fatigue, depressive symptoms, aerobic capacity, and physical functioning. Studies on diet and nutrition (15 records) support that low fat intake and Mediterranean diet may be beneficial for reducing cardiovascular risk, but large interventional studies are lacking. Studies on harmful exposures (7 records) support photoprotection and use of sunscreen. While studies imply benefits regarding disease burden and drug efficacy in non-smokers and regarding HRQoL in normal-weight patients, more survey is needed on tobacco smoking and alcohol consumption, as well as weight control strategies. Studies on social relations (1 record) and sleep (no records) were sparse or non-existent. In conclusion, psychosocial interventions are viable for managing depressive symptoms, and exercise appears essential for reducing fatigue and improving aerobic capacity and physical function. Photoprotection should be recommended to all patients. Lifestyle interventions should be considered a complement, not a substitute, to pharmacotherapy.

Patients' Preferences for Systemic Lupus Erythematosus Treatments-A Discrete Choice Experiment.

BACKGROUND: Symptoms of systemic lupus erythematosus (SLE) vary between patients, but those of increased disease activity typically include musculoskeletal and mucocutaneous manifestations such as joint pain, swelling, and rashes. Several treatment options are available to patients with SLE with variable efficacy. Many treatments, especially corticosteroids, cause unwanted side effects, although little is currently known about patients' preferences for treatments of SLE. OBJECTIVE: We aimed to identify which attributes of SLE treatment are valued by patients and to quantify their relative importance. METHODS: Adult participants with moderate-to-severe SLE were asked to make a series of choices between two hypothetical treatments in an online discrete choice experiment (DCE). A latent class model (LCL) was estimated to analyze choice data. Relative attribute importance (RAI) was calculated to determine the importance of each attribute to participants. RESULTS: A total of 342 participants from the USA completed the survey. A three-class LCL model was found to have the best fit. Class 1 (non-attenders) had non-significant preferences across all attributes. To achieve a better fit, a constrained LCL (cLCL) model was run with the two remaining classes. The most important attributes for participants in class 2 (benefit-seekers) were joint pain (RAI = 32.0%), non-joint pain (RAI = 21.8%), fatigue (RAI = 20.1%), and skin rashes and itching (RAI = 19.1%). The most important attributes for participants in class 3 (risk-avoiders) were risk of non-severe side effects from corticosteroids (RAI = 28.4%), risk of severe side effects from corticosteroids (RAI = 21.4%), and the risk of infections (RAI = 19.2%). Risk-avoiders were more likely to have been diagnosed with SLE for a longer period (>1 year) and were more likely to have experience with oral corticosteroids. CONCLUSIONS: SLE patients fall into two groups with distinct preferences: benefit-seekers, who prioritize reducing the impact of disease symptoms, and risk-avoiders, who prioritize avoiding treatment risks. The implication of this finding will depend on the reasons for these differences, which warrant further research. Our study suggests that these differences arise due to the impact of disease and treatment experience on preferences. If so, well-informed patients may not be willing to tolerate the risks associated with oral corticosteroids in exchange for their benefits.

Health-related quality of life in Chinese SLE patients: evidence from 1568 SLE patients and 2610 healthy controls.

OBJECTIVE: To investigate the effects of systemic lupus erythematosus (SLE) on health-related quality of life (HRQOL), the relationship between disease activity and HRQOL, and potential factors affecting HRQOL in Chinese SLE patients. METHODS: This study recruited 1568 patients and 2610 controls to explore the effects of SLE on HRQOL. The association between disease activity and HRQOL, and the influencing factors of HRQOL were determined in 1568 patients. Then, we prospectively followed 1096 patients to explore the association between reduced disease activity and improved HRQOL, and the influencing factors of improved HRQOL. The Short-Form 36 (SF-36) and SLE disease activity index (SLEDAI) were used to evaluate HRQOL and disease activity. RESULTS: Chinese SLE patients had lower HRQOL than controls in all domains (P < 0.001), especially in role-physical (RP) and role-emotional (RE). Compared with SLE patients from outside China, the HRQOL of Chinese patients appeared to be higher in mental component summary (MCS) but lower in RP and RE. SLEDAI was negatively correlated with HRQOL, which was validated using the results of a follow-up study, where SLEDAI reduction was positively associated with HRQOL improvements (P < 0.05). Furthermore, personality, life nervous and experiences of adverse life events may influence HRQOL and HRQOL improvements. CONCLUSION: SLE significantly affected the HRQOL of Chinese patients, especially in RP and RE. Disease activity was negatively correlated with HRQOL. We also found for the first time some factors affecting HRQOL, which can be regarded as the basis for improving the HRQOL of SLE patients.

Comparison of kinesiophobia in patients with rheumatoid arthritis and systemic lupus erythematosus.

OBJECTIVE: Patients with rheumatic disease often experience arthritis and chronic joint pain, which can lead them to avoid movement, known as kinesiophobia. This may result in decreased mobility and endurance, as well as social isolation and depression. This study aimed to assess and compare the prevalence of kinesiophobia among patients with rheumatoid arthritis (RA) and systemic lupus erythematosus (SLE), and its association with disease activity, functional status, fear of falling, and fatigue. PATIENTS AND METHODS: A cross-sectional study was conducted with 124 RA, 76 SLE patients, and 87 healthy controls. The tampa kinesiophobia scale (TKS) was used to assess kinesiophobia. The disease activity was assessed using Disease Activity Score 28 (DAS28) in RA, and systemic lupus erythematosus Disease Activity Index 2000 (SLEDAI-2K) in SLE patients. The Health Assessment Questionnaire (HAQ) was used to assess functional status, the Falls Efficacy Scale International (FES-I) was used to assess fear of falling, and the Fatigue Severity Scale (FSS) was used to assess fatigue levels. RESULTS: Kinesiophobia was significantly more prevalent in RA patients compared to SLE patients [77.4% vs. 63.2%, odds ratio (OR): 2, 95% CI: 1.07-3.75; p<0.05]. The mean TKS score was 41.42±6.95 in RA patients, and 37.84±8.85 in SLE (p=0.005). TKS scores were positively correlated with DAS28 in RA patients; however, no correlation was found between SLEDAI-2K in SLE patients. A positive correlation was observed between TKS scores and the HAQ, FSS, and FES-I, both in RA and SLE patients. CONCLUSIONS: RA patients exhibited significantly higher kinesiophobia scores compared to SLE patients. The higher rate of kinesiophobia levels in RA patients compared to SLE patients suggests an association between kinesiophobia and the more destructive course of RA, indicating that tight control of the disease is important. Kinesiophobia was associated with functional impairment, fear of falling, and fatigue. Timely identification and intervention for patients with kinesiophobia are essential to prevent progression, mitigate long-term consequences, and maintain functional capacity.

Association between depression and pain, functional disability, disease activity and health-related quality of life in patients with systemic lupus erythematosus: a meta-analysis.

OBJECTIVE: The aim of this study was to explore the effect of depression on pain, disease activity, functional disability and health-related quality of life measured by Visual Analogue Scale, Systemic Lupus Erythematosus Disease Activity Index, Health Assessment Questionnaire and Short Form-36 in patients with systemic lupus erythematosus. DESIGN: Meta-analysis. DATA SOURCES: The PubMed, EMBASE, Cochrane Library and Web of Science were searched for obtaining available studies from inception to 7 March 2023. ELIGIBILITY CRITERIA FOR SELECTING STUDIES: Studies evaluating the impact of depression on pain, disease activity, functional disability and quality of life were included. DATA EXTRACTION AND SYNTHESIS: Two authors independently screened publications and extracted data according to set inclusion and exclusion criteria. Statistical analyses were conducted with RevMan V.5.3.0. Data were pooled using a fixed-effects or random-effects model according to heterogeneity. RESULTS: A total of 13 identified studies met the inclusion criteria, reporting on a total of 1911 patients with systemic lupus erythematosus. The Visual Analogue Scale score was significantly higher in patients with depression than those without depression (standardised mean difference (SMD)=0.84 (95% CI 0.27 to 1.42), p=0.004). The Health Assessment Questionnaire score was significantly higher in patients with depression than those without depression (SMD=1.05 (95% CI 0.14 to 1.95), p<0.05). The Systemic Lupus Erythematosus Disease Activity Index score was significantly higher in patients with depression than those without depression (SMD=0.46 (95% CI 0.27 to 0.64), p<0.00001). Scores in most Short Form-36 dimensions (physical function, role physical function, emotional role function, vitality, mental health, social function, general health, physical component scale, mental component scale) were lower in patients with depression than those without depression. CONCLUSION: This meta-analysis showed that depression was associated with increased in pain, functional disability and disease activity, and decline in health-related quality of life in patients with systemic lupus erythematosus. Awareness of the importance of the relationship between depression in systemic lupus erythematosus patients and pain, functional disability and the quality of life might assist rheumatology physicians and nurses in assessing and preventing these symptoms. PROSPERO REGISTRATION NUMBER: CRD42021265694.

Systemic lupus erythematosus in American Indian/Alaska natives: Incorporating our new understanding of the biology of trauma.

OBJECTIVE: To review the literature regarding systemic lupus erythematosus (SLE) in American Indian/Alaska Native (AI/AN) people and relate prevalence and/or disease severity to our emerging understanding of the biology of trauma and toxic stress. METHODS: We conducted a search and review of the literature using search terms "lupus and American Indians" "ACEs and disease outcome" "Biology of Adversity" "lupus and ACE scores," " lupus and childhood abuse." These search criteria were entered into Google Scholar and articles retrieved from PubMed, NBCI. This approach yielded a small numbers of papers used throughout this review. We excluded articles that were not published in a peer reviewed journals, as well as editorial commentaries. RESULTS: In the AI/AN population, SLE shows high prevalence rates and severe disease manifestations, comparable to the African American population. AI/AN populations also have high rates of childhood trauma. Toxic stress and trauma such as those catalogued in the Adverse Childhood Experiences (ACE) study have broad-reaching immunologic and epigenetic effects that are likely to be relevant to our understanding of SLE in AI/AN people. CONCLUSIONS: AI/AN people have high rates of SLE. These high rates are likely to be driven by many complex factors, not all of which are genetic. Future research is needed to establish (or refute) a causal connection between the biology of adversity and SLE in socially marginalized and historically traumatized populations.

Post-COVID-19 depression and anxiety in patients with systemic lupus erythematosus.

OBJECTIVES: This study aimed to evaluate depression and anxiety in patients with systemic lupus erythematosus (SLE) in the post-coronavirus disease-2019 (COVID-19) period and their potential association with the disease activity and related organ damage. PATIENTS AND METHODS: This is a case-control study including 120 adult Egyptian patients with SLE: sixty patients with SLE who were proven previously to be positive for severe acute respiratory syndrome coronavirus-2 (SARS-CoV-2) by polymerase chain reaction (PCR) and recovered during the 3 months prior to the study were included in the case group and an equal number of age- and sex-matched patients with SLE and no evidence of SARS-CoV-2 infection were included in the control group. Patients' clinical history was collected, and they underwent clinical evaluation, including SLE disease activity, damage assessment, and psychological assessment. RESULTS: The mean depression and anxiety scores were significantly higher in cases than in the control group. Both scores showed a significant positive correlation with age, disease duration, the Systemic Lupus International Collaborating Clinics/American College of Rheumatology (SLICC/ACR) Damage Index for SLE (SDI), and SLE disease activity index (SLEDAI) and a significant negative correlation with education years. Hierarchical multivariate regression analyses revealed that COVID-19 infection was a predictor for severe depression and moderate-to-severe anxiety. CONCLUSIONS: Patients with SLE, who are already vulnerable to physiological stressors, are especially predisposed to more risk of anxiety and depression when they are contracted with COVID-19 disease. Furthermore, anxiety and depression are associated with SLE activity and damage scores, and COVID-19 infection is a significant predictor for their severity. These results suggest that healthcare providers should give special attention to the mental health of SLE patients, especially during the COVID-19 pandemic.

Incident racial discrimination predicts elevated C-Reactive protein in the Black Women's experiences Living with Lupus (BeWELL) study.

INTRODUCTION: Racial discrimination is a distinct health threat that increases disease risk among Black Americans. Psychosocial stress may compromise health through inflammatory mechanisms. This study examines incident experiences of racial discrimination and changes in the inflammatory biomarker C-reactive protein (CRP) over a two-year period among Black women with systemic lupus erythematosus (SLE)-an inflammatory autoimmune disease sensitive to psychosocial stress and characterized by stark racial inequities in outcomes. METHODS: Data are from the Black Women's Experiences Living with Lupus (BeWELL) Study. Participants (n = 380) from metropolitan Atlanta, Georgia were enrolled from April 2015 to May 2017. Incident racial discrimination was assessed bi-annually via self-report using the Experiences of Discrimination measure. CRP was assessed annually over a two-year period. Latent change score analyses modeled longitudinal within-person associations between incident racial discrimination and change in log-transformed CRP from baseline to Year 2. RESULTS: Incident experiences of racial discrimination were associated with elevated log-CRP across the two-year study period (b = 0.039, SE = 0.017, 95% CI: 0.006, 0.071). For each domain of incident racial discrimination experienced, CRP increased 3.98%. CONCLUSION: This study contributes to growing evidence on the biological consequences of racism and is the first to document an association between incident racial discrimination and changes in inflammation among Black women with SLE. Racial inequities in SLE outcomes and other diseases driven by inflammatory pathways may be explained in part through experiences of racial discrimination.

A multi-site pilot randomized clinical trial of the Treatment and Education Approach for Childhood-onset Lupus (TEACH) program: study design and COVID-19 adaptations.

BACKGROUND: Childhood-onset Systemic Lupus Erythematosus (cSLE) is an autoimmune disease associated with fatigue, mood symptoms, and pain. Fortunately, these symptoms are potentially modifiable with psychological intervention such as cognitive-behavioral therapy (CBT). The Treatment and Education Approach for Childhood-onset Lupus (TEACH) program is a CBT intervention developed to target these symptoms for adolescents and young adults with cSLE. This pilot randomized controlled trial (RCT) aims to determine the feasibility and effect of TEACH for youth with cSLE. Adjustments to the study protocol following the COVID-19 pandemic are also described. METHODS: This two-arm multisite RCT will explore the feasibility (primary outcome) and effect (secondary outcome) of a remotely delivered TEACH protocol. Participants will be randomized to a six-week remotely delivered TEACH program plus medical treatment as usual (TAU) or TAU alone. We will include patients ages 12-22 years presenting to rheumatology clinics from six sites. Validated measures of fatigue, depressive symptoms, and pain will be obtained at baseline and approximately eight and 20 weeks later. Protocol adjustments were also made due to the COVID-19 pandemic, in collaboration with the investigative team, which included patients and caregivers. CONCLUSIONS: Findings from this multi-site RCT aim to document the feasibility of TEACH and provide an estimate of effect of a remotely delivered TEACH protocol on fatigue, depression, and pain symptoms in youth with cSLE as compared to standard medical treatment alone. This findings may positively impact clinical care for patients with cSLE. CLINICAL TRIALS: gov registration: NCT04335643.

The Outcomes of an e-Wellness Program for Lupus Patients in Thailand: A Participatory Action Research Approach.

OBJECTIVES: Systemic lupus erythematosus (SLE) or lupus patients usually experience various physical and psychological challenges. Since the coronavirus disease 2019 pandemic, these challenges have become even harsher. Using the participatory action research approach, this study evaluated how an e-wellness program (eWP) impacted SLE-related knowledge and health behaviors, mental health, and quality of life among lupus patients in Thailand. METHODS: A 1-group, pretest-posttest design study was conducted among a purposive sample of lupus patients who were members of Thai SLE Foundation. The 2 main intervention components were: (1) online social support, and (2) lifestyle and stress management workshops. Sixty-eight participants completed all the study requirements, including the Physical and Psychosocial Health Assessment questionnaire. RESULTS: After being in the eWP for 3 months, participants' mean score for SLE-related knowledge increased significantly (t=5.3, p<0.001). The increase in sleep hours was statistically significant (Z=-3.1, p<0.01), with the percentage of participants who slept less than 7 hours decreasing from 52.9% to 29.0%. The percentage of participants reporting sun exposure decreased from 17.7% to 8.8%. The participants also reported significantly lower stress (t(66)=-4.4, p<0.001) and anxiety (t(67)=-2.9, p=0.005). The post-eWP quality of life scores for the pain, planning, intimate relationship, burden to others, emotional health, and fatigue domains also improved significantly (p<0.05). CONCLUSIONS: The overall outcomes showed promising results of improved self-care knowledge, health behaviors, mental health status, and quality of life. It is recommended that the SLE Foundation continues to use the eWP model to help the lupus patient community.

In-person versus virtual administration of the American College of Rheumatology gold standard cognitive battery in systemic lupus erythematosus: Are they interchangeable?

OBJECTIVE: During the COVID-19 pandemic, many research studies were adapted, including our longitudinal study examining cognitive impairment (CI) in systemic lupus erythematosus (SLE). Cognitive testing was switched from in-person to virtual. This analysis aimed to determine if the administration method (in-person vs. virtual) of the ACR-neuropsychological battery (ACR-NB) affected participant cognitive performance and classification. METHODS: Data from our multi-visit, SLE CI study included demographic, clinical, and psychiatric characteristics, and the modified ACR-NB. Three analyses were undertaken for cognitive performance: (1) all visits, (2) non-CI group visits only and (3) intra-individual comparisons. A retrospective preferences questionnaire was given to participants who completed the ACR-NB both in-person and virtually. RESULTS: We analysed 328 SLE participants who had 801 visits (696 in-person and 105 virtual). Demographic, clinical, and psychiatric characteristics were comparable except for ethnicity, anxiety and disease-related damage. Across all three comparisons, six tests were consistently statistically significantly different. CI classification changed in 11/71 (15%) participants. 45% of participants preferred the virtual administration method and 33% preferred in-person. CONCLUSIONS: Of the 19 tests in the ACR-NB, we identified one or more problems with eight (42%) tests when moving from in-person to virtual administration. As the use of virtual cognitive testing will likely increase, these issues need to be addressed - potentially by validating a virtual version of the ACR-NB. Until then, caution must be taken when directly comparing virtual to in-person test results. If future studies use a mixed administration approach, this should be accounted for during analysis.

Depression in systemic lupus erythematosus: A manifestation of microcirculation dysfunction?

OBJECTIVES: Depression is highly prevalent among systemic lupus erythematosus (SLE) patients. Brain hypoperfusion in neuropsychiatric SLE patients might be associated with emotional difficulties. However, no previous study examined possible associations of depression with brain oxygenation during a mild physical stress in non-neuropsychiatric SLE patients. Our study aimed to identify possible differences in cerebral oxygenation during exercise in SLE patients with and without depressive symptoms using near-infrared spectroscopy (NIRS) and examine possible underlying mechanisms through evaluation of vascular cell adhesion molecule 1 (VCAM-1) levels. METHODS: SLE patients without a known neuropsychiatric history or treatment with antidepressants or antipsychotic drugs were enrolled. Participants were assigned into groups based on Beck's Depression Inventory I (BDI-I). Patients with BDI-I score ≥10 comprised the SLE-depression group and those with BDI-I score <9 the SLE-non-depression group. All participants underwent a protocol involving a seated rest, a 3-min handgrip exercise (at 30% of maximal strength), and a 3-min recovery. NIRS was used to monitor changes in cerebral oxygenated hemoglobin (O2Hb), deoxygenated (HHb), and total hemoglobin (tHb). VCAM-1 levels were measured in serum samples. RESULTS: Twenty-three patients were enrolled. During exercise, the SLE-depression group exhibited a significantly lower increase in cerebral O2Hb [(peak-O2Hb (p = 0.039); O2Hb-area under the curve, AUC, p = 0.027) vs. SLE-non-depression group. BDI-I score was inversely correlated with AUC (rho = -0.493, p = 0.017) and positively correlated with VCAM-1 levels (rho = 0.501, p = 0.034). CONCLUSION: This study suggests a possible association between emotional abnormalities and microvascular impairment (cerebral oxygenation and endothelial dysfunction) in SLE However, larger studies are needed to confirm these results.

Telehealth-supervised exercise in systemic lupus erythematosus: A pilot study.

OBJECTIVES: To explore the feasibility and effectiveness of telehealth-supervised exercise for adults with Systemic lupus erythematosus (SLE). METHODS: This was a non-randomised controlled pilot trial comparing telehealth-supervised exercise (8 weeks, 2 days/week, 45 min, moderate intensity) plus usual care with usual care alone. Mixed methods were used to assess change in fatigue (FACIT-fatigue), quality of life (SF36), resting fatigue and pain (11-point scale), lower body strength (five-time sit-to-stand) and endurance (30 s sit-to-stand), upper body endurance (30 s arm curl), aerobic capacity (2 min step test), and experience (survey and interviews). Group comparison was performed statistically using a two-sample T-test or Mann-Whitney U-test. Where known, we used MCID or MCII, or assumed a change of 10%, to determine clinically meaningful change within groups over time. Interviews were analysed using reflexive thematic analysis. RESULTS: Fifteen female adults with SLE were included (control group n = 7, exercise group n = 8). Statistically significant differences between groups, in favour of the exercise intervention, were noted for SF36 domain emotional well-being (p = 0.048) and resting fatigue (p = 0.012). There were clinically meaningful improvements over time for FACIT-fatigue (+6.3 ± 8.3, MCID >5.9), SF36 domains physical role functioning (+30%), emotional role functioning (+55%), energy/fatigue (+26%), emotional well-being (+19%), social functioning (+30%), resting pain (-32%), and upper body endurance (+23%) within the exercise group. Exercise attendance was high (98%, 110/112 sessions); participants strongly agreed (n = 5/7, 71%) or agreed (n = 2/7, 29%) they would do telehealth-supervised exercise again and were satisfied with the experience. Four themes emerged: (1) ease and efficiency of exercising from home, (2) value of live exercise instruction, (3) challenges of exercising at home, and (4) continuation of telehealth-supervised exercise sessions. CONCLUSION: Key findings from this mixed-method investigation suggest that telehealth-supervised exercise was feasible for, and well-accepted by, adults with SLE and resulted in some modest health improvements. We recommend a follow-up RCT with more SLE participants.

Construct validity of Patient-Reported Outcomes Measurement Information System Paediatric measures in juvenile idiopathic arthritis and systemic lupus erythematosus: cross-sectional evaluation.

OBJECTIVES: Evaluate construct validity of Patient-Reported Outcomes Measurement Information System (PROMIS) Paediatric measures of symptoms and functioning against measures of disease activity among youth with juvenile idiopathic arthritis (JIA) or systemic lupus erythematosus (SLE). DESIGN: Cross-sectional associations among PROMIS measures and clinical metrics of disease activity were estimated. SETTING: Seven clinical sites of the Childhood Arthritis and Rheumatology Alliance (CARRA) in the USA. PARTICIPANTS: Youth aged 8-17 years enrolled in the CARRA Registry. INTERVENTION: PROMIS measures were collected and associations with clinical measures of disease activity estimated, by condition, in bivariate and multivariable analyses with adjustment for sociodemographics, insurance status, medications and disease duration. MAIN OUTCOME MEASURES: PROMIS Paediatric measures of mobility, physical activity, fatigue, pain interference, family relationships, peer relationships, depressive symptoms, psychological stress, anxiety, and meaning and purpose, and clinical metrics of disease. RESULTS: Among 451 youth (average age 13.8 years, 71% female), most (n=393, 87%) had a JIA diagnosis and the remainder (n=58, 13%) had SLE. Among participants with JIA, those with moderate/high compared with low/inactive disease had, on average, worse mobility (multivariable regression coefficient and 95% CIs) (-7.40; -9.30 to -5.50), fatigue (3.22; 1.02 to 5.42), pain interference (4.76; 3.04 to 6.48), peer relationships (-2.58; -4.52 to -1.64), depressive symptoms (3.00; 0.96 to 5.04), anxiety (2.48; 0.40 to 4.56) and psychological stress (2.52; 0.68 to 4.36). For SLE, youth with active versus inactive disease had on average worse mobility (-5.07; -10.15 to 0.01) but PROMIS Paediatric measures did not discriminate participants with active and inactive disease in adjusted analyses. CONCLUSIONS: Seven PROMIS Paediatric measures discriminated between active and inactive disease in youth with JIA. Results advance the usefulness of PROMIS for understanding well-being and improving interventions for youth with JIA, but larger studies are needed to determine utility in SLE cohorts. TRIAL REGISTRATION NUMBER: National Institute of Arthritis and Musculoskeletal and Skin Diseases (U19AR069522).

High Prevalence but Low Impact of Cognitive Dysfunction on Quality of Life in Patients With Lupus and Neuropsychiatric Symptoms.

OBJECTIVE: To evaluate the prevalence and impact of cognitive impairment on health-related-quality of life (HRQoL) in patients with systemic lupus erythematosus (SLE) and neuropsychiatric (NP) symptoms. METHODS: Patients with SLE and NP symptoms referred to the Leiden NPSLE clinic (2007-2019) were included. In a multidisciplinary evaluation, NP symptoms were attributed to SLE (NPSLE: inflammatory, ischemic, or both combined) or other causes. Four cognitive domains were determined: global cognitive function (score 0-30), learning and memory, executive function and complex attention, and psychomotor speed (all T scores). HRQoL was determined using the mental component score and physical component score of the Short Form 36 health survey. The associations between cognition and NPSLE phenotype and cognition and HRQoL were assessed with multiple regression analyses and linear mixed models corrected for confounding and expressed in SDs. RESULTS: A total of 357 patients (86% female, mean age 44 years) were included. Of those 357 patients, 169 had a follow-up visit (median follow-up 11 months). Impairment in global cognitive function was present in 8% of patients, and in all other cognitive domains in ±50%. The most severe impairment (all domains) was seen in patients with a combined NPSLE phenotype. Diffuse cognitive impairment (learning and memory, executive function and complex attention, and psychomotor speed) was most common and was present more often in patients with an inflammatory phenotype. A weak association between cognition and HRQoL was found both cross-sectionally and longitudinally. In general, 1 SD lower scores on the cognitive domains were associated with at most one-fifth SD lower HRQoL. CONCLUSION: Objective cognitive impairment is common in SLE patients with NP symptoms, but may have a limited influence on HRQoL.

Digital Narratives of Living With Lupus: Lived Experiences and Meanings for Latin American and Latino Patients and Their Families.

OBJECTIVE: Systemic lupus erythematosus (SLE) disproportionately affects Latin American and Latino populations, with worse outcomes compared to nonminority populations. Understanding patients' views is critical to provide culturally competent care. The objective of this research is to analyze lived experiences with SLE from comments made by Latin American and Latino patients, and their relatives and friends, on the public Facebook group "Hablemos de Lupus" (in English: "Let's Talk about Lupus"). METHODS: Deidentified narratives posted as a reaction to the most popular resources shared by the page were extracted using the Facepager application. We conducted a thematic analysis under an interpretative medical anthropology framework. RESULTS: Five core themes were demonstrated by social media comments: lived experiences with lupus, religious/spiritual thoughts, metaphors, heredity, and experiences of family and friends. Being diagnosed with lupus is perceived as a life-changing event. The fluctuating course of the disease causes uncertainty, and the perception of invisibility within the patient's social circle generates feelings of being misunderstood. Faith and spiritual thoughts are coping strategies. Patients use metaphors about the disease's meaning and their lived experiences (the purple butterfly, not belonging, bellicose metaphors) to communicate with others. Relatives and friends are impacted by their loved one's distress. CONCLUSION: Patients perceive lupus as an unpredictable illness and use metaphors to foster empathy and communicate their experiences to others. Religion is as important as medical treatment to cope with the disease, and the experience of having lupus extends to family and friends. Findings can be used to improve physician-patient communication and lupus education campaigns in the Latin American and Latino population.

Comprehension, Utility, and Acceptability of a Multidomain Physical Functioning Report for Systemic Lupus Erythematosus Patients and Their Providers.

OBJECTIVE: Patient-provider discussions about functioning are often outside the scope of usual care for systemic lupus erythematosus (SLE), and tools to facilitate such discussions are lacking. The present study was undertaken to assess the comprehension, utility, and acceptability of a novel, individualized functioning report, the purpose of which is to facilitate patient-provider communication about functioning, in a predominantly Black SLE patient population. METHODS: Individualized reports (including sections with pictorial representations of participants' measured activities of daily living, falls, physical performance, perceived physical functioning, and community mobility from a previous pilot study visit) and surveys were emailed or mailed to 59 SLE patients. Ease of interpretation was dichotomized ("very easy" versus all other responses). Utility and acceptability were assessed by items relating to usefulness for care planning and comfort with discussing the report. RESULTS: Among 47 (79.7%) SLE patients who completed the survey (78.7% Black, 91.5% female, mean age 49.6 years), the reported ease of interpretation ranged from 70.2% to 85.1% across the report sections. Ease of interpretation was lower among those who were older, Black, and female and who had lower cognitive scores (P > 0.05 for all). Most reported that physical functioning domains of the report were useful for treatment or other care planning (70.2-80.5%) and that they felt comfortable discussing the report with a health care provider (93.2-100%). CONCLUSION: We found that a novel functioning report for SLE patients was associated with high comprehension, utility, and acceptability. Future studies can help determine how an individualized functioning report could improve patient-provider communication in the clinic setting.

A Controlled Community Study of Distress and Resilience in Women Diagnosed with Fibromyalgia and Systemic Lupus Erythematosus.

This study examines psychological and physical influences on the distress and well-being of patients with chronic rheumatic diseases. The study aims were to (1) evaluate the relative contribution of objective disease activity and psychological factors on the wellbeing of patients with systemic lupus erythematosus (SLE); (2) to compare the psychological distress of SLE patients to fibromyalgia (FM) patients and healthy controls, and to (3) characterize subgroups of patients by performing cluster analysis using psychological variables. Participants were ascertained from closed forums and social media channels resulting in 41 women with a diagnosis of SLE, 47 with a diagnosis of FM, and 77 healthy controls (HC). Hierarchical linear regression for well-being of SLE patients found that most of the variance was accounted for by social support. Cluster analysis performed on the entire sample identified two clusters, a distressed group tending to Type D personality, anxiety and depression, low in well-being and social support, and a resilient group; the proportion of resilient individuals was highest in the HC intermediate in the SLE group and lowest in the FM group. The importance of psychological variables vs disease severity in these two rheumatic diseases for wellbeing is demonstrated by these results. The results suggest that psychological interventions that enhance the experience of social support in medical settings, might benefit patients with both diseases, and be of particular importance to the well-being of patients who are more distressed.

Trust in the attending rheumatologist, health-related hope and medication adherence among Japanese systemic lupus erythematosus patients.

OBJECTIVE: Poor medication adherence among patients with SLE is a critical problem associated with adverse outcomes. This study examined the relationship between trust in one's physician and goal-oriented thinking, hope and medication adherence among Japanese patients with SLE who were ethnically matched to their physicians. METHODS: This cross-sectional study was conducted in the rheumatology outpatient clinics at five academic centres. Patients with SLE who were prescribed oral medications were included. The main exposures were trust in one's physician measured via the 5-item Japanese version of the Wake Forest Physician Trust Scale and the 18-item Health-related Hope Scale, with each score ranging from 0 to 100 points. Medication adherence was measured using the 12-item Medication Adherence Scale with scores ranging from 5 to 60 points. A general linear model was created after adjusting for demographics, socioeconomic status, disease activity, disease duration, basic health literacy, depression, medication variables, experiencing adverse effects and concerns regarding lupus medications. RESULTS: Altogether, 373 patients with SLE were included. The mean age of the patients was 46.4 years; among them, 329 (88.2%) were women. Both trust in one's physician (per 10-point increase: 0.86, 95% CI 0.49, 1.22) and the Health-related Hope score (per 10-point increase: 0.66, 95% CI 0.35, 0.97) were associated with better medication adherence. CONCLUSIONS: This study demonstrated that patients' health-related hope and trust in their rheumatologist were both associated with better medication adherence in SLE.

Alexithymia in systemic lupus erythematosus: A cross sectional study in a Brazilian sample.

BACKGROUND: Alexithymia is considered as a reduced capacity to be aware of, to clearly recognize, and to define one's feelings with a limited fantasy and a concrete, externally oriented cognitive style. Some studies have stated that alexithymia is more common in systemic lupus erythematosus patients (SLE) than in general population but there is a paucity of studies in such context. AIM: To study the prevalence of alexithymia in a sample of SLE patients looking for associated epidemiological and clinical findings and its relationship to quality of life. METHODS: Cross-sectional study in 93 SLE patients collecting clinical, epidemiological, and serological data, data on quality of life by 12 item short health survey (SF-12), and alexithymia by Toronto scale (TAS-26). Disease's cumulative damage was measured by Systemic Lupus International Collaborating Clinics/American College of Rheumatology Damage index. RESULTS: In this sample (90.3% females and median age of 46 years), 55.9% had alexithymia; 22/92 (23.9%) did not and 19/93 (20.4%) had inconclusive results. Alexithymia presence had a positive association with age (p = 0.01) and a negative association with presence of glomerulonephritis (25% vs 59%; p = 0.005) and glucocorticoid use (19.2% vs 59.0%; p = 0.0007). A negative correlation of TAS-26 was observed with mental domain of (r = -0.46; p < 0.0001) and physical domain (r = -0.32; p = 0.004) of SF-12, but not with cumulative damage index. CONCLUSION: We found a high prevalence of alexithymia in this sample of SLE patients that negatively associated with quality of life, but not with cumulative damage index.