Financial Hardship and Sleep Quality Among Black American Women With and Without Systemic Lupus Erythematosus.

OBJECTIVE: To compare dimensions of financial hardship and self-reported sleep quality among Black women with versus without systemic lupus erythematosus (SLE). METHODS: Participants were 402 Black women (50% with validated diagnosis of SLE) living in Georgia between 2017 and 2020. Black women with SLE were recruited from a population-based cohort established in Atlanta, and Black women without SLE were recruited to be of comparable age and from the same geographic areas as SLE women. Financial hardship was measured using three different scales: financial adjustments, financial setbacks, and financial strain. Sleep was assessed continuously using the Pittsburgh Sleep Quality Index (PSQI) scale. Each dimension of financial hardship was analyzed separately in SLE-stratified multivariable linear regression models and adjusted by sociodemographic and health status factors. RESULTS: Dimensions of financial hardship were similarly distributed across the two groups. Sleep quality was worse in Black women with, versus without, SLE (p < .001). Among Black women with SLE, financial adjustment was positively associated with a 0.40-unit increase in poor sleep quality (95% CI = 0.12-0.67, p = .005). When accounting for cognitive depressive symptoms, financial setbacks and strain were somewhat attenuated for Black women with SLE. Overall, no associations between financial hardships and sleep quality were observed for the women without SLE. CONCLUSIONS: Black women with SLE who experience financial hardships may be more at risk for poor sleep quality than Black women without SLE. Economic interventions targeting this population may help improve their overall health and quality of life.

Relationships among organ damage, social support, and depression in African American women with systemic lupus erythematosus.

OBJECTIVES: Systemic lupus erythematosus (SLE) disproportionately strikes African American women. Social support can potentially reduce disease impact. The purpose of this study is to understand the relationship between organ damage and depression in African American women and how social support influences this relationship. METHODS: We used a mixed methods design, analyzing self-reported data on lupus-related organ damage, depression, and social support in 437 African American women with SLE recruited in the Georgians Organized Against Lupus (GOAL) cohort. Moreover, we conducted interviews among 15 GOAL participants to gather patients' perspectives about the role of social support in people who live with lupus. RESULTS: We found a significant association between organ damage and depression ( r = 0.163, p = 0.001), as well as between depression and social support ( F = 17.574, p < 0.001). The quantitative analysis did not render social support as a significant moderator in the organ damage-depression relationship. Interviews, however, revealed that African American women with the most severe organ damage have the greatest need for support. CONCLUSIONS: Social support is a key resource for lupus patients with high disease burden. Overall, these findings highlight the importance of monitoring depressive symptoms in this population and developing interventions aimed to increase social support available to lupus patients.

Local perspectives on the environmental public health tracking program.

Strong state-local relationships within the Environmental Public Health Tracking Program (Tracking Program) can enhance the ability of the Centers for Disease Control and Prevention and state and local health departments to collect and analyze data that would help determine links between environmental exposure and health. Since the National Association of County & City Health Officials is particularly interested in how local-state partnerships could benefit the Environmental Public Health Tracking Network, this article features strategies to engage local health departments. First, state-local facilitated discussions have been shown to positively impact the public's health. Second, Martin County conducted a program that taught women to avoid overconsumption of high-mercury seafood, which was also implemented in other Florida counties. Finally, the Cincinnati Health Department initiated a project that promoted data sharing with the state, and the results have also been promising. Such efforts indicate that state-local partnerships have the potential to support and enrich the Tracking Program.

Quantitative detection of pre-ovulatory luteinizing hormone surges in urine using the microfluidic vertical agitation approach.

Identifying the time of ovulation is an important process for women seeking and avoiding pregnancy. Luteinizing hormone (LH) plays an important role in ovulation, which is very important in the reproductive mechanism. Therefore, detecting the LH level is of great importance in monitoring ovulation. In this study, sensitive, rapid and selective electrochemical biosensors were developed to detect LH quantitatively from human urine samples and to monitor the ovulation period. Isopotential region and current density optimization studies revealed that sensors with an electrode width and spacing of 1 mm had the optimum performance. Electrochemical impedance spectra evidenced immobilization of DSP self-assembled monolayers and anti-LH-beta antibody on the surface. While the mobile phone vibrator led to a 3.5-fold enhancement in response signals, the agitation system developed resulted in a 10-fold improvement. The sensors displayed detection limits of 1.02 and 1.53 mIU/ml in the range of 0-40 mIU/ml LH concentration obtained using two statistical approaches. Additionally, the sensors showed no cross-reactivity to hCG, which is very similar in structure and is widely reported to have high cross-reactivity.

Quantifying Infiltration for Quality Control in Printed Mesoscopic Perovskite Solar Cells: A Microscopic Perspective.

Mesoscopic carbon-based perovskite solar cells (CPSCs) are often cited as a potential frontrunner to perovskite commercialization. Infiltration, the extent to which perovskite fills the mesoporous scaffold, is critical for optimum performance and stability. However, infiltration data are usually presented as qualitative photographic comparisons of samples with extreme infiltration variation. This work examines how small infiltration defects impact performance using an optical microscopy examination of the base TiO2 layer to identify issues and develop targeted techniques for infiltration enhancement. Critically, the uninfiltrated area at the base of the stack was found to correlate well with PCE across multiple batches of varied print quality and ZrO2 thickness. Through reduction of mesh mark defects and improvement of print quality in the ZrO2 and carbon layers, a champion PCE of 15.01% is attained. It follows that this facile, multiscaled, nondestructive technique could enable targeted performance enhancement and quality control in future scale-up initiatives.

Direct medical charges in a population-based systemic lupus erythematosus cohort.

AIM: This study aimed to obtain estimates for the direct medical charges associated with hospitalizations and emergency department visits of validated SLE cases in a diverse Systemic Lupus Erythematosus (SLE) population. METHODS: The Georgians Organized Against Lupus (GOAL) cohort is a population-based cohort of adult SLE patients from metropolitan Atlanta, GA USA, an area having a diverse SLE population. The GOAL cohort aims to study the impact of social determinants of health (SDoH) on outcomes relevant to patients, healthcare providers, and policymakers. For this study, survey data collected during 2011-2012 was linked to the Georgia Hospital Discharge Database (HDD) to capture hospital admissions (HAs) and emergency department visits (EDVs) throughout Georgia from 2012 through 2013. Direct medical charges were summarized by HCU type among all patients, among those with actual visits, and by socio-demographics and healthcare factors. RESULTS: Among 829 patients (94% women, 78% Black, 64% non-private insurance, 64% not-employed, mean age of 46), 170 (20.5%) and 300 (36.2%) participants had at least one HA and one EDV in 1-year of follow-up, respectively, with 111(13.4%) having both HA and EDV. On average, each patient experienced 0.38 HAs and 0.91 EDVs, with per-patient direct medical charges of $14,968 for HAs & $3,022 for EDVs, and $39,645 per HA & $3,305 per EDV. Patients with higher social vulnerability or more severe disease had higher charges for both HA and EDV (p < 0.01), likely due to the delayed care and neglected health needs leading to more advanced and costly medical treatments. Living below the federal poverty level was associated with higher charges for EDVs (p < 0.001) but with lower charges for HAs (p = 0.036). CONCLUSIONS: This study underscores the economic burden of SLE on vulnerable populations, emphasizing the importance of including socio-economic factors in healthcare planning. Policy efforts should prioritize reducing disparities in access to care and implementing preventive strategies.

Physical Performance in a Diverse, Population-Based Cohort of Individuals With Systemic Lupus Erythematosus.

OBJECTIVE: To report the burden and correlates of poor physical performance in a diverse cohort of individuals with systemic lupus erythematosus (SLE). METHODS: In this single-visit study of 446 individuals with SLE from a population-based metropolitan Atlanta cohort, we measured physical performance via the Short Physical Performance Battery (score range 0-12; intermediate-low [<10] vs high [≥10]). We also collected demographic, clinical, and psychosocial variables and examined the associations (adjusted odds ratios [aORs]) of intermediate-low versus high physical performance with these characteristics via multivariable logistic regression. RESULTS: We found that more than half (59.6%) of our participants had poorer (intermediate-low) overall physical performance. Only 7% of the cohort received the maximum score on the lower body strength task versus 90% and 76% receiving the maximum scores on balance and gait speed tasks. Current employment status (aOR 0.69, 95% confidence interval [CI] 0.45-1.05) and higher cognitive functioning (aOR 0.57, 95% CI 0.42-0.77) were strongly associated with lower odds of intermediate-low physical performance. Higher body mass index (aOR 1.25, 95% CI 1.01-1.56), disease activity (aOR 1.59, 95% CI 1.27-1.98), and disease burden (aOR 1.38, 95% CI 1.08-1.77) were associated with poorer performance, as were higher depressive symptoms, perceived stress scores, and lower educational attainment (not statistically significant). CONCLUSION: In our population-based, primarily Black cohort, we found that individuals with SLE commonly had poor physical performance. We identified both SLE- and non-SLE-specific factors that could help clinicians identify those most at risk for poor physical performance and intervene to improve, maintain, and support physical performance among those with SLE.

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.

Informing Digital Programs for Lupus Self-Management Education: A Systematic Scoping Review.

OBJECTIVE: We describe the characteristics, content, and effectiveness of digital self-management (SM) education programs for lupus and other chronic conditions to identify gaps and inform the improvement of future programs in lupus. METHODS: Three bibliographic databases were searched for articles published between May 2012 and April 2022. The search was cast to capture the breadth of digital SM education programs in the following conditions: lupus, epilepsy, fibromyalgia, multiple sclerosis, sickle cell anemia, Sjögren syndrome, psoriatic arthritis, and rheumatoid arthritis. Title and abstract screening, as well as full-text review, was conducted by two independent reviewers. Data extraction was first completed by one author charting all studies and then, a second time, by four members of the research team charting collaboratively. RESULTS: Of the 1,969 articles identified through the search, 14 met inclusion criteria. Two additional articles were included following bibliography review. The 16 articles represented 12 unique digital SM education programs. Programs covered five conditions: epilepsy (n = 3), fibromyalgia (n = 2), multiple sclerosis (n = 4), lupus (n = 1), and rheumatoid arthritis (n = 2). Most programs were asynchronous and internet-based (n = 9) with a prescribed sequence of content (n = 8). Peer, technical, or specialist support was offered in seven programs. Most programs demonstrated statistically significant improvement of symptoms in the intervention group (n = 8). CONCLUSION: This scoping review summarizes the current landscape for digital SM education programs in lupus and similar conditions. In lupus, further investigation will fill in the gaps around digital SM education needs, user experience, and evaluation of outcomes.

Comparison of cognitive performance measures in individuals with systemic lupus erythematosus.

OBJECTIVE: Cognitive impairment is a common complaint in SLE, but approaches to measuring cognitive performance objectively vary. Leveraging data collected in a population-based cohort of individuals with validated SLE, we compared performance and potential impairment across multiple measures of cognition. METHODS: During a single study visit (October 2019-May 2022), times to complete the Trail Making Test B (TMTB; N=423) were recorded; potential impairment was defined as an age-corrected and education-corrected T-score <35 (>1.5 SD longer than the normative time). A clock drawing assessment (CLOX; N=435) with two parts (free clock draw (CLOX1) and copy (CLOX2)) was also performed (score range: 0-15; higher scores=better performance); potential impairment was defined as CLOX1 <10 or CLOX2 <12. Fluid cognition (N=199; in-person visits only) was measured via the National Institutes of Health (NIH) Toolbox Fluid Cognition Battery and expressed as age-corrected standard scores; potential impairment was defined by a score <77.5 (>1.5 SD lower the normative score). RESULTS: Participants (mean age 46 years; 92% female; 82% black) had a median (IQR) TMTB time of 96 (76-130) s; median (IQR) CLOX1 and CLOX2 scores of 12 (10-13) and 14 (13-15); and a mean (SD) fluid cognition standard score of 87.2 (15.6). TMTB time and fluid cognition score (ρ=-0.53, p<0.001) were the most highly intercorrelated measures. Overall, 65%, 55% and 28% were potentially impaired by the TMTB test, CLOX task and NIH Toolbox Fluid Cognition Battery, respectively. While there was overlap in potential impairment between TMTB and CLOX, more than half (58%) had impairment by only one of these assessments. Few (2%) had impairment in fluid cognition only. CONCLUSION: The TMTB, CLOX and NIH Fluid Cognition Battery each provided unique and potentially important information about cognitive performance in our SLE cohort. Future studies are needed to validate these measures in SLE and explore interventions that maintain or improve cognitive performance in this population.

Restoring estuarine ecosystems using nature-based solutions: Towards an integrated eco-engineering design guideline.

Traditional solutions to estuarine flood risk management have typically involved the implementation of static 'hard' shoreline protection structures, often at the expense of the natural landscape and the societal and ecosystem benefits they provide. In a changing climate, there is an increasing need to restore these estuarine ecosystems, and alternative measures in the form of Nature-based Solutions (NbS) are being considered. Guidance that balances ecology and engineering is required for NbS to establish as self-sustaining ecosystems. In this study, a review of NbS guidelines was undertaken, revealing an absence of technical content bridging ecological and engineering values. Instead, most guidelines focus on NbS project implementation, identifying engineering aspects, and providing frameworks for investors and project managers. Integration of technical engineering and ecological outcomes within NbS guidelines is needed. A conceptual approach for integrating eco-engineering aspects for estuarine ecosystems is proposed. This conceptual approach focuses on the critical thresholds and parameter relationships associated with establishment, growth, recovery and mortality, and functionality of estuarine NbS, in efforts to quantify changes in ecological development and flood risk mitigation services. The conceptual approach documents how the suggested relationships between parameters can be adopted by practitioners in the short-term, medium-term, and long-term. The application of this conceptual approach to multi-habitat restoration is explored, including lifecycle timing and ecosystem/design functionality. The findings of this study demonstrate the need for an integrated NbS design guideline that balances ecology and engineering research for the long-term success of estuarine ecosystems.

Remote Administration of Physical and Cognitive Performance Assessments in a Predominantly Black Cohort of Persons With Systemic Lupus Erythematosus.

OBJECTIVE: In a study of physical and cognitive functioning among predominantly Black individuals with systemic lupus erythematosus (SLE), we compared remotely administered physical and cognitive performance assessments to those collected in person. METHODS: A subset of participants who completed an in-person visit in our parent study from 2021 to 2022 (n = 30) were recruited to complete a second, remote visit within 28 days. Physical performance (measured by a modified Short Physical Performance Battery [SPPB]; range 0-12; subscale ranges 0-4; higher = better performance) and cognitive performance (episodic and working memory adjusted t-scores, measured using NIH Toolbox) were measured at both visits. Mean scores were compared using paired t-tests; intraclass correlation coefficients (ICCs) were obtained from two-way mixed effects models. Linear and logistic models were used to estimate stratified associations between performance measures and related outcomes. RESULTS: Participants were primarily female (93.3%) and Black (93.3%). In-person versus remote overall SPPB (8.76 vs. 9.43) and chair stand (1.43 vs. 1.90) scores were statistically significantly lower. t-Scores for episodic memory (47.27 vs. 49.53) and working memory (45.37 vs. 47.90) were lower for in-person versus remote visits. The ICC for overall SPPB indicated good agreement (0.76), whereas the ICCs for episodic (0.49) and working memory (0.57) indicated poor-moderate agreement. Associations between assessments of performance with related outcomes were similar and did not statistically significantly differ by modality of visit. CONCLUSION: To possibly expand and diversify pools of participants in studies of physical and cognitive performance in SLE, remote administration of assessments should be considered for future research.

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.

Benefits of a self-management program in low-income African-American women with systemic lupus erythematosus: results of a pilot test.

Minorities with systemic lupus erythematosus (SLE) are at high risk of poor disease outcomes and may face challenges in effectively self-managing multiple health problems. The Chronic Disease Self-Management Program (CDSMP) is an evidence-based intervention that improves the health of people with chronic illnesses. Although the CDSMP is offered by organizations throughout the United States and many countries around the world, it has not been tested among SLE patients. We pilot tested the benefits of the CDSMP in low-income African American patients with SLE. CDSMP workshops were delivered to 49 African American women with SLE who received medical care at a public lupus clinic in Atlanta, Georgia, US. We compared pre-post CDSMP changes (from baseline to 4 months after the start of the intervention) in health status, self-efficacy and self-management behaviors using self-reported measures. Additionally, we assessed health care utilization changes using electronic administrative records in the 6-month periods before and after the intervention. We observed significant improvements post-intervention in the SF-36 physical health component summary (mean change = 2.4, p = 0.032); self-efficacy (mean change = 0.5, p = 0.035); and several self-management behaviors: cognitive symptoms management (mean change = 0.3, p = 0.036); communication with physicians (mean change = 0.4, p = 0.01); and treatment adherence (mean change = 0.4, p = 0.01). The median number of outpatient visits decreased from 3 to 1 (p < .0001). The CDSMP is a promising intervention for low-income African Americans with SLE. It is an inexpensive program with growing availability around the world that should be further evaluated as a resource to improve patient-centered outcomes and decrease health service utilization among SLE patients.

Differential effects of 1α,25-dihydroxycholecalciferol on MCP-1 and adiponectin production in human white adipocytes.

BACKGROUND/AIM: Obesity is characterized by a low-grade inflammation in white adipose tissue (WAT), which promotes insulin resistance. Low serum levels of 1α,25-dihydroxycholecalciferol (DHCC) associate with insulin resistance and higher body mass index although it is unclear whether vitamin D supplementation improves insulin sensitivity. We investigated the effects of DHCC on adipokine gene expression and secretion in adipocytes focusing on two key factors with pro-inflammatory [monocyte chemoattractant protein-1 (MCP-1/CCL2)] and anti-inflammatory [adiponectin (ADIPOQ)] effects. METHODS: Pre-adipocytes were isolated from human subcutaneous WAT and cultured until full differentiation. Differentiated adipocytes were either pre-treated with DHCC (10(-7) M) and subsequently incubated with tumor necrosis factor-α (TNFα, 100 ng/mL) or concomitantly incubated with TNFα/DHCC. MCP1 and adiponectin mRNA expression was measured by RT-PCR and protein release by ELISA. RESULTS: DHCC was not toxic and did not affect adipocyte morphology or the mRNA levels of adipocyte-specific genes. TNFα induced a significant increase in CCL2 mRNA and protein secretion, while DHCC alone reduced CCL2 mRNA expression (~25%, p < 0.05). DHCC attenuated TNFα-induced CCL2 mRNA expression in both pre-incubation (~15%, p < 0.05) and concomitant (~60%, p < 0.01) treatments. TNFα reduced ADIPOQ mRNA (~80%) and secretion (~35%). DHCC alone decreased adiponectin secretion to a similar degree (~35%, p < 0.05). Concomitant treatment with DHCC/TNFα for 48 h had an additive effect, resulting in a pronounced reduction in adiponectin secretion (~70%). CONCLUSIONS: DHCC attenuates MCP-1 and adiponectin production in human adipocytes, thereby reducing the expression of both pro- and anti-inflammatory factors. These effects may explain the difficulties so far in determining the role of DHCC in insulin sensitivity and obesity in humans.

Cross-sectional study of the effects of self-efficacy on fatigue and pain interference in black women with systemic lupus erythematosus: the role of depression, age and education.

OBJECTIVE: While fatigue and pain are pervasive symptoms in SLE, self-efficacy can mitigate their intensity and impact on patients' daily activity. We examined the relationships of these domains and their interactions with demographics and depression in black women with SLE. METHODS: This is a cross-sectional analysis of data collected among 699 black women with SLE. We used validated, self-reported measures of fatigue, pain interference, symptom self-efficacy, treatment self-efficacy and depression. Linear regression analyses were conducted to examine the relationships between each outcome (fatigue and pain interference) and each predictor (symptom self-efficacy and treatment self-efficacy), and the interaction of demographics and depression. RESULTS: We found inverse associations between fatigue and each of symptom self-efficacy (slope -0.556, p<0.001) and treatment self-efficacy (slope -0.282, p<0.001), as well as between pain interference and each of symptom self-efficacy (slope -0.394, p<0.001) and treatment self-efficacy (slope -0.152, p<0.001). After adjusting for confounders, symptom self-efficacy remained significantly associated with each outcome (adjusted slope -0.241 (p<0.001) and -0.103 (p=0.008) for fatigue and pain, respectively). The amount of decrease in fatigue and pain interference differed by depression severity (p<0.05 for the interaction of symptom self-efficacy and depression). The difference in fatigue by depression widened as symptom self-efficacy increased; the adjusted fatigue scores for moderate/severe depression compared with no depression were 6.8 and 8.7 points higher at mean and high symptom self-efficacy, respectively (p<0.001). Age and education significantly changed the relationship between outcomes and self-efficacy. CONCLUSIONS: Symptom self-efficacy and treatment self-efficacy were inversely related to fatigue and pain interference in black women with SLE. Depression disproportionately increased the intensity of these outcomes. While older women with low symptom self-efficacy reported disproportionately higher pain interference, those with higher education and mean or high levels of symptom self-efficacy reported lower pain interference. These findings may help predict who might benefit most from self-efficacy-enhancing interventions.

Cognitive Problems and Their Clinical Assessment in Systemic Lupus Erythematosus: Contrasting Patient and Provider Views.

OBJECTIVE: Systemic lupus erythematosus (SLE) is a complex chronic disease associated with reduced cognitive functioning. Patients with SLE report cognitive symptoms, but cognitive assessment is not routine in SLE and little is known about day-to-day cognitive problems and their effect on disease management. As part of a pilot exploring the use of a cognitive functioning report prototype for shared decision-making in clinical encounters (the Approaches to Positive Patient-Centered Experiences of Aging in Lupus [APPEAL] Study), we investigated the relevance of cognitive assessments performed using the National Institutes of Health (NIH) Toolbox among patients with SLE. METHODS: We conducted 4 focus groups, 2 with SLE patients (n = 18) and 2 with lupus providers (physicians and nurses; n = 9), addressing cognitive issues and interest in communicating about cognition. We compared how NIH Toolbox cognitive domains (episodic memory, working memory, processing speed, attention and inhibitory control, cognitive flexibility) matched with patient- and provider-identified cognitive problems and needs. RESULTS: Patients identified all NIH domains with rich experiential examples; providers identified fewer domains and offered less detail. An unanticipated additional domain was prospective memory (i.e., problems with remembering future actions). Use of technologic aids (e.g., smart phone alerts) was mentioned by some patients, but not providers, and represent a potential opportunity for medical care. All participants expressed interest in discussing cognition in clinic. CONCLUSION: Cognitive assessment using the NIH Cognitive Toolbox is relevant to this population, with the possible addition of a prospective memory assessment. Cognitive problems and indications of communication gaps suggest the appropriateness of more clinical communication about cognition in the SLE population.

Association of COVID-19 pandemic-related concern and health routine changes with functioning among individuals with systemic lupus erythematosus.

OBJECTIVE: To examine whether pandemic-related issues were associated with physical functioning, community mobility and cognition among individuals with SLE. METHODS: Participants were recruited (6 October 2020-11 November 2021) for this cross-sectional study from a population-based cohort of individuals with validated SLE in metropolitan Atlanta, as part of an ongoing ancillary study. Pandemic-related issues (concern about the pandemic (very vs somewhat/not at all concerned); changes in physical activity and sleep (less vs more/same); difficulty obtaining food and medications and accessing routine care (any vs none)) were self-reported. Self-reported physical functioning and episodic and working memory performance were reported as t-scores (such that a score of 50=population mean and a 10-point difference=1 SD) and community mobility scores ranged from 0 to 120, with higher scores representing better functioning for all domains. Differences in scores were assessed via t-tests and age-adjusted, sex-adjusted and race-adjusted linear regression. RESULTS: Among 245 participants (mean age, 46 years; 95% female, 77% black), physical functioning t-scores (mean=44) were consistently lower (by 3-5 points) for those who reported concern about the pandemic, less physical activity and sleep, difficulty obtaining food and medications, and accessing routine care. Similarly, community mobility scores (mean=48) were lower (by 10-20 points) for these individuals. There were no substantial differences in episodic memory and working memory t-scores (mean=50 and 47, respectively) by pandemic-related issues. CONCLUSION: We found that physical functioning and community mobility, but not cognition, were lower among those who reported more concern about the pandemic or greater disruptions to health routines. Future studies should explore interventions among these vulnerable individuals with SLE, who already disproportionately suffer from functional impairment, to maintain functioning and prevent adverse outcomes during times of crisis.

Depression, stigma and social isolation: the psychosocial trifecta of primary chronic cutaneous lupus erythematosus, a cross-sectional and path analysis.

OBJECTIVE: Depression is common in individuals with chronic cutaneous lupus erythematosus (CCLE). However, how CCLE may impact patients' psychological well-being is poorly understood, particularly among disproportionally affected populations. We examined the relationships between depression and psychosocial factors in a cohort of predominantly Black patients with primary CCLE (CCLE without systemic manifestations). METHODS: Cross-sectional assessment of individuals with dermatologist-validated diagnosis of primary CCLE. NIH-PROMIS short-forms were used to measure depression, disease-related stigma, social isolation and emotional support. Linear regression analyses (ɑ=0.05) were used to test an a priori conceptual model of the relationship between stigma and depression and the effect of social isolation and emotional support on that association. RESULTS: Among 121 participants (87.6% women; 85.1% Black), 37 (30.6%) reported moderate to severe depression. Distributions of examined variables divided equally among those which did (eg, work status, stigma (more), social isolation (more), emotional support (less)) and did not (eg, age, sex, race, marital status) significantly differ by depression. Stigma was significantly associated with depression (b=0.77; 95% CI0.65 to 0.90), whereas social isolation was associated with both stigma (b=0.85; 95% CI 0.72 to 0.97) and depression (b=0.70; 95% CI0.58 to 0.92). After controlling for confounders, stigma remained associated with depression (b=0.44; 95% CI0.23 to 0.66) but lost significance (b=0.12; 95% CI -0.14 to 0.39) when social isolation (b=0.40; 95% CI 0.19 to 0.62) was added to the model. Social isolation explained 72% of the total effect of stigma on depression. Emotional support was inversely associated with depression in the univariate analysis; however, no buffer effect was found when it was added to the multivariate model. CONCLUSION: Our findings emphasise the psychosocial challenges faced by individuals living with primary CCLE. The path analysis suggests that stigmatisation and social isolation might lead to depressive symptoms. Early clinical identification of social isolation and public education demystifying CCLE could help reduce depression in patients with CCLE.

Patient and provider perceptions of a novel cognitive functioning report for patients with systemic lupus erythematosus: a qualitative study.

OBJECTIVE: To determine whether and how cognitive assessment data should be included in a report for patients with SLE and their providers. METHODS: Leveraging experiences from prior studies, we created a cognitive report that included a hypothetical patient's results on tests of multiple domains based on the NIH Toolbox Fluid Cognition Battery. In focus groups that comprised patients with SLE (two groups) and their providers (two groups), feedback was sought on the presentation of results as well as the potential value of the report in the clinical setting. RESULTS: Feedback regarding the presentation of the report was generally positive. Both patients with SLE and their providers liked its simple graphics and use of a colour-gradated scale to indicate performance. However, both groups stressed the importance of using non-stigmatising language in describing results. Several potential purposes of the report, including distinguishing cognitive versus other issues, explaining cognitive challenges, improving patient-provider interactions, guiding decision-making, improving functioning or preventing impairment and tracking cognitive function over time, were noted by the participants. Potential barriers, such as inadequate clinical staffing or time and lack of potential treatments for identified issues, were also discussed. CONCLUSION: In this exploratory study, we found that both patients with SLE and their providers were receptive to the idea of a patient-friendly report of cognitive test results. This study provides important information to guide future pragmatic research to optimise the delivery of cognitive information to patients with SLE.