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. We assessed 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” vs. 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), 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 healthcare 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.
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.
OBJECTIVE: Whether using provider-attributed end-stage renal disease (ESRD) cause of systemic lupus erythematosus (SLE) in national surveillance data captures the entire population of patients with SLE and ESRD remains uncertain. Our goal was to examine attributed cause of ESRD in US surveillance data among patients with SLE who have developed ESRD.
METHODS: Data from a national registry of treated ESRD (United States Renal Data System (USRDS)) were linked to the population-based Georgia Lupus Registry (GLR). The provider-attributed cause of ESRD was extracted from the USRDS for each validated patient with SLE in the GLR (diagnosed through 2004) who initiated treatment for ESRD through 2012. The percentage of these patients with SLE whose ESRD was subsequently attributed to SLE in the USRDS was calculated, overall and by patient characteristics.
RESULTS: Among 251 patients with SLE who progressed to ESRD, 78.9% had SLE as their attributed cause of ESRD. Of the remaining 53 patients, 43.4%, 18.9% and 15.6% had ESRD attributed to hypertension, diabetes mellitus type II and non-SLE-related glomerulonephritis, respectively. Attribution of ESRD to SLE was higher among patients aged ≤30 (87.9-93.9%) vs >30 (52.6%; p<0.001) but did not differ by sex or race. Having Medicaid (86.2%) or no insurance (93.5%) was associated with greater attribution of ESRD to SLE than having private insurance (72.5%; p=0.02), as was having two or more providers state a diagnosis of SLE (89.0% vs 73.5% with a rheumatologist diagnosis alone; p=0.008).
CONCLUSIONS: These estimates indicate that USRDS-based studies may underreport ESRD among US patients with SLE. However, observed patterns of differential attribution of ESRD cause, particularly by age, suggest that providers may be correctly attributing ESRD to causes other than SLE among some patients with SLE.
Objective: African American patients with systemic lupus erythematosus (SLE) are at high risk for poor outcomes. Both patient characteristics and the severity of the disease may influence physician–patient interactions, which in turn can impact disease outcomes. We aimed to examine whether patient perceptions of interpersonal processes of care (i.e. physician–patient interactions) varied by demographic characteristics, disease activity, and/or depression in African American patients with SLE. Methods: The Georgians Organized Against Lupus (GOAL) is a cohort drawn from a population-based registry of people with SLE. We conducted a cross-sectional analysis of patient-reported data collected in 2016–17 among 698 African American participants (out of 863 GOAL participants). We assessed physician–patient interactions (communication, patient-centered decision making, and physician interpersonal style) through the Interpersonal Processes of Care survey (IPC-29), disease activity through the Systemic Lupus Activity Questionnaire, and depression through the Patient Health Questionnaire-9. Mean scores of the IPC-29 scales were compared by gender, age and educational attainment with Wilcoxon rank-sum 2-sample test or Kruskal Wallis test. We conducted linear trend test to examine demographic-adjusted scores of IPC across severity of disease activity and depression, and multivariate logistic regression analyses to examine the association of disease activity and depression with suboptimal IPC scores. Results: Overall, the lowest mean scores were observed for the patient-centered decision making domain, and specifically about how often doctors assessed patients’ problems to follow recommendations and treatment among females compared with males (mean scores 3.13 ± 1.42 and 3.64 ± 1.38, respectively; p = 0.015). Mean scores for the assumed socioeconomic level subdomain (how often doctors make assumptions about a patient's socioeconomic level) were worse in individuals aged 18–34 (mean score 1.59 ± 0.94), compared to those aged 35–55 (mean score 1.47 ± 0.94; p = 0.033). Patients with some college or higher educational attainment reported poorer mean scores for most communication and interpersonal style scales than those who reported high-school or less. We found significant linear trends of poorer scores for all communication scales across more severe disease activity and depression symptoms, and poorer scores for all interpersonal style scales across more severe disease activity. Multivariate models revealed that while depression was associated with suboptimal quality of both communication (OR 1.20; 95% CI 1.04–1.39) and interpersonal style (OR 1.12; 95% CI 1.01–1.25), disease activity only increased the odds of suboptimal interpersonal style (OR 1.13; 95% CI 1.03–1.25). Conclusion: In the African American population with SLE, suboptimal interactions with providers may be explained in part by the mental and physical symptoms of the patient, regardless of age, gender and education. In addition to standard of care treatment, SLE patients with more severe disease activity and depression might need provider-based interventions focused on communication and interpersonal style.
Objective: African American (AA) people with systemic lupus erythematosus (SLE) are at high morbidity and mortality risk, and they often require multiple medications. Low medication adherence is a highly prevalent, multidimensional problem associated with poor outcomes in people with SLE. Depression, a predictor of low adherence in people with chronic conditions, has been described in over 35% of AAs with SLE. We hypothesized that depressive symptoms would be increasingly associated with low adherence in this population.
Methods: Research subjects predominantly belong to the Georgians Organized Against Lupus cohort, a population-based cohort of predominantly AA individuals with SLE in the Atlanta metropolitan area. Medication adherence and severity of depressive symptoms were measured using validated self-reported tools: The 8-item Morisky Medication Adherence Scale and the 9-item Patient Health Questionnaire, respectively. We used univariate and multivariate logistic regression to examine the odds ratios of low medication adherence across individuals with increasing severity of depressive symptoms.
Results: Among 632 AA SLE participants, 336 (54%) reported low medication adherence and 217 (34.6%) reported "moderate" or "severe" depressive symptoms. In univariate logistic regression, significant risk factors for low adherence were depressive symptoms, low self-efficacy, poor satisfaction with care, female sex, younger age, hurried patient-physician communication, poorer shared decision-making, less compassionate physician communication style, poor/fair health, and higher disease activity score. In multivariate regression, younger age, female sex, and more severe depressive symptoms were associated with low medication adherence.
Conclusions: This is the first study to examine factors associated with low medication adherence among a population-based cohort of AA individuals with SLE. Depression was a strong correlate of low medication adherence. Mental health interventions aiming to address and treat depression may increase medication adherence.
Objective: To evaluate patient perceptions of biologic therapies from a large, population-based cohort of patients with SLE with significant numbers of blacks and whites and across the full spectrum of socioeconomic strata and disease severity.
Methods: This was a cross-sectional study of validated patients with SLE enrolled in the Georgians Organized Against Lupus Cohort between September 2014 and August 2015. The survey instrument was developed ad hoc by the authors and contained an introduction on biologics.
Results: A total of 676 participants were on average 48.4 years old with 15.9 years of disease; 93.2% were female and 80.6% were black; 34.2% had private health insurance and 9.8% had no insurance; and 26.8% and 27.5% had Medicare or Medicaid, respectively. Of all respondents, 30.8% had heard of biologics, with a significant difference between blacks and whites (25.2% vs 53.4%, respectively). There were no significant differences, however, between blacks and whites with respect to ever having been on biologics (7.6% and 11.5%, respectively) or where they got their information about biologics. Out of 202 individuals who had heard of biologics, 102 (51.3%) were familiar with potential benefits or side effects, and most (n=129, 66.5%) had a neutral perception to risks associated with biologic use. There was no perception of biologics working differently between races/ethnicities. More (n=76, 62.8%) blacks preferred intravenous over subcutaneous modalities compared with whites (n=12, 37.5%) but were not as willing to pay as much out of pocket for it. Individuals with Medicare were significantly more likely to have been on biologics.
Conclusions: There are important similarities and differences between blacks and whites with lupus with respect to their perceptions of biologic therapies and their impact. There are opportunities to increase patient exposure to information about biologics and improve their understanding in order for them to make the best informed decision possible.
Objective To examine associations of perceived stress with cognitive symptoms among adults with systemic lupus erythematosus (SLE). Methods Among 777 adult (≥18 years) SLE patients, the association of Perceived Stress Scale (PSS) scores with two self-reported cognitive symptoms was examined: forgetfulness (severe/moderate vs. mild/none; from the Systemic Lupus Activity Questionnaire) and difficulty concentrating (all/most vs. some/little/none of the time; from the Lupus Impact Tracker). The study used multivariable logistic regression to estimate the odds ratios (ORs) per minimal important difference (MID = 0.5∗SD) of PSS score and cognitive symptoms. Results Forgetfulness and difficulty concentrating were reported by 41.7% and 29.5%, respectively. Women and those with less education and high disease activity had higher PSS scores and were more likely to report cognitive symptoms than their counterparts. With adjustment for age, race, sex, education, and disease activity, each MID increase in PSS score was associated with higher prevalence of forgetfulness (OR = 1.43, 95% CI 1.29-1.47) and difficulty concentrating (OR = 2.19, 95% CI 1.90-2.52). No substantial differences in this association by age, race, sex, or disease activity were noted. Conclusions SLE patients, particularly those with high disease activity, report a high burden of cognitive symptoms, for which stress may be a modifiable risk factor.
Objective: To use multidomain functional assessment, which is commonly performed in geriatric patients but is novel in patients with systemic lupus erythematosus (SLE), to better understand functional impairment in patients with SLE.
Methods: We recruited 60 adult participants (aged 20–39 years [26.7%], 40–59 years [50.0%], and ≥60 years [23.3%]; 80.0% African American and 90.0% female) from an existing cohort of SLE patients. During in-person visits (from October 2016 to April 2017), we evaluated physical performance (range 0–4, with higher scores indicating better performance), cognitive performance (5 fluid cognition domains; adjusted T scores), and self-reported measures including physical functioning (T scores), activities of daily living (ADLs), falls, and life-space mobility.
Results: In the SLE patients, the mean balance score (3.7) and gait speed score (3.4) were high, while the mean lower body strength score was low (1.8). Cognitive performance was average (score of 5.0) for episodic (47.7) and working (48.6) memory and low average for cognitive flexibility (43.7), processing speed (42.6), and attention/inhibitory control (38.8 [>1 SD below average]) when compared with healthy individuals of the same age, sex, race, ethnicity, and education level. Most participants reported the ability to independently perform basic ADLs, but many reported the inability to independently perform instrumental ADLs. Nearly half (45.0%) of participants reported falling in the prior year. Only 40.0% reported unlimited ability to travel without the help of another person. Scores generally did not differ substantially according to age.
Conclusion: Our results suggest a high prevalence of impairment across multiple domains of function in SLE patients of all ages, similar to or exceeding the prevalence observed in much older geriatric populations. Further research into the added value of geriatric assessment in routine care for SLE is warranted.
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.
African American women with SLE experience faster progression and worse consequences of disease compared with their White counterparts. This study sought to examine whether self-reported routine experiences of discrimination, as a source of psychosocial stress, is associated with disease damage among African American women with SLE.