Patterns of patient-reported symptoms and association with sociodemographic and systemic sclerosis disease characteristics: a scleroderma Patient-centered Intervention Network (SPIN) Cohort cross-sectional study

Background Systemic sclerosis is a heterogenous disease in which little is known about patterns of patient-reported symptom clusters. We aimed to identify classes of individuals with similar anxiety, depression, fatigue, sleep disturbance, and pain symptoms and to evaluate associated sociodemographic and disease-related characteristics. Methods This multi-centre cross-sectional study used baseline data from Scleroderma Patient-centered Intervention Network Cohort participants enrolled from 2014 to 2020. Eligible participants completed the PROMIS-29 v2.0 measure. Latent profile analysis was used to identify homogeneous classes of participants based on patterns of anxiety, depression, fatigue, sleep disturbance, and pain scores. Sociodemographic and disease-related characteristics were compared across classes. Findings Among 2212 participants, we identified five classes, including four classes with “Low” (565 participants, 26%), “Normal” (651 participants, 29%), “High” (569 participants, 26%), or “Very High” (193 participants, 9%) symptom levels across all symptoms. Participants in a fifth class, “High Fatigue/Sleep/Pain and Low Anxiety/Depression” (234 participants, 11%) had similar levels of fatigue, sleep disturbance, and pain as in the “High” class but low anxiety and depression symptoms. There were significant and substantive trends in sociodemographic characteristics (age, education, race or ethnicity, marital or partner status) and increasing disease severity (diffuse disease, tendon friction rubs, joint contractures, gastrointestinal symptoms) across severity-based classes. Disease severity and sociodemographic characteristics of “High Fatigue/Sleep/Pain and Low Anxiety/Depression” class participants were similar to the “High” severity class. Interpretation Most people with systemic sclerosis can be classified by levels of patient-reported symptoms, which are consistent across symptoms and highly associated with sociodemographic and disease-related variables, except for one group which reports low mental health symptoms despite high levels of other symptoms and substantial disease burden. Studies are needed to better understand resilience in systemic sclerosis and to identify and facilitate implementation of cognitive and behavioural strategies to improve coping and overall quality of life

Validity, Reliability, and Differential Item Functioning of English and French Versions of the 10-Item Connor-Davidson Resilience Scale in Systemic Sclerosis: A Scleroderma Patient-Centered Intervention Network Cohort Study

Objective Some individuals with systemic sclerosis (SSc) report positive mental health, despite severe disease manifestations, which may be associated with resilience, but no resilience measure has been validated in SSc. This study was undertaken to assess the validity, reliability, and differential item functioning (DIF) between English- and French-language versions of the 10-item Connor-Davidson Resilience Scale (CD-RISC-10) in SSc. Methods Eligible participants were enrolled in the Scleroderma Patient-centered Intervention Network Cohort and completed the CD-RISC-10 between August 2022 and January 2023. We used confirmatory factor analysis (CFA) to evaluate the CD-RISC-10 factor structure and conducted DIF analysis across languages with Multiple Indicators Multiple Causes models. We tested convergent validity with another measure of resilience and measures of self-esteem and depression and anxiety symptoms. We assessed internal consistency and test–retest reliability using Cronbach\u27s alpha and intraclass correlation coefficient (ICC). Results A total of 962 participants were included in this analysis. CFA supported a single-factor structure (Tucker–Lewis index = 0.99, comparative fit index = 0.99, root mean square error of approximation = 0.08 [90% confidence interval (90% CI) 0.07, 0.09]). We found no meaningful DIF. Internal consistency was high (α = 0.93 [95% CI 0.92, 0.94]), and we found that correlations with other measures of psychological functioning were moderate to large (|r| = 0.57–0.78) and confirmed study hypotheses. The scale showed good 1–2-week test–retest reliability (ICC 0.80 [95% CI 0.75, 0.85]) in a subsample of 230 participants. Conclusion The CD-RISC-10 is a valid and reliable measure of resilience in SSc, with score comparability across English and French versions

Socioeconomic Disparities Associated with Healthcare Utilization among Adults with Rheumatoid Arthritis

Background Rheumatoid arthritis (RA) is a chronic and debilitating disease associated with negative health outcomes and high healthcare utilization. Little is known about the role of demographic and socioeconomic factors associated with healthcare utilization in RA. Objectives The purpose of this study was to explore the relationships between demographic and socioeconomic characteristics, insurance status, general health perception, and healthcare utilization among adults with RA. Methods In this cross-sectional analysis of data from 537 participants with a self-reported diagnosis of RA from the 2017-2020 National Health and Nutrition Examination Survey, multivariate logistic regression analyses were used to explore the relationships between demographic and socioeconomic factors, insurance status, general health perception, and healthcare utilization (i.e., whether an individual saw a provider, had a routine place to go for healthcare, and stayed overnight in the hospital). Results The mean age of participants was 57 years; 50% were female, 57.9% were non-Hispanic White, 17.9% were Black, and 15.2% were Mexican or other Hispanic. Individuals without health insurance were less likely than insured individuals with RA to have seen a provider, have a routine place to go for healthcare, and have stayed overnight in the hospital. Adults with RA who rated their health as very good or excellent were more likely to have a routine place for healthcare and less likely to stay overnight in the hospital than those who rated their health as fair or poor. Discussion Lack of health insurance significantly correlates with decreased healthcare utilization in adults with RA in the United States. Our findings underscore the need for more frequent assessment of insurance status in adults with RA to identify individuals at an increased risk for reduced healthcare utilization and who are more likely to experience poorly perceived general health

Nurse-led interventions in systemic autoimmune rheumatic diseases: a systematic review

Abstract Background Nurses play an important role in the management of patients with systemic autoimmune rheumatic diseases. Little is known about the effectiveness of nurse-led interventions on patient-reported outcomes in this population. The aim of this systematic review was to examine the evidence of nurse-led interventions in systemic autoimmune rheumatic diseases. Methods Using the Preferred Reporting Items for Systematic Reviews and Meta-Analysis guidelines, a comprehensive literature search was conducted in PubMed, Cumulative Index to Nursing and Allied Health Literature, PsycINFO, and Embase for studies published from database inception to September 2022. Studies were included if they were published in a peer-reviewed journal in English and evaluated the effectiveness of a nurse-led intervention using a randomized controlled trial design in adults with a systemic autoimmune rheumatic disease. Screening, full-text review, and quality appraisal were conducted by two independent reviewers. Results A total of 162 articles were identified for possible inclusion, of which five studies were included. Four of five studies (80%) were conducted in systemic lupus erythematosus. There was significant variability in the types of nurse-led interventions; the majority included educational sessions and follow up counseling by a nurse (n = 4). The most common patient-reported outcomes were health-related quality of life (n = 3), fatigue (n = 3), mental health (including anxiety and depression) (n = 2), and self-efficacy (n = 2). The duration of the interventions varied from 12 weeks to 6 months. All studies included a nurse with specialized training and education and showed significant improvements in their primary outcomes. The majority of the studies (60%) were considered high methodological quality. Conclusion This systematic review provides emerging evidence for the use of nurse-led interventions in systemic autoimmune rheumatic diseases. Our findings emphasize the important role of nurses in providing nonpharmacological strategies to help patients better manage their disease and improve health outcomes

Pain and Self-Efficacy among Patients with Systemic Sclerosis: A Scleroderma Patient-Centered Intervention Network Cohort Study

Background Pain is one of the most common symptoms affecting patients with systemic sclerosis; however, little is known about the relationship between self-efficacy and pain and changes in pain over time. Objectives The purpose of this study was to describe the relationships between self-efficacy and pain in patients with systemic sclerosis, as well as determine whether changes in self-efficacy mediate changes in pain. Methods A prospective longitudinal study was conducted using data from the Scleroderma Patient-Centered Intervention Network Cohort. The baseline sample included 1,903 adults, with a trajectory subsample of 427 who completed 3-month assessments across 3 years. Hierarchical (sequential) forward multivariable regression, covarying for participant characteristics, was conducted to determine the association between self-efficacy and patient characteristics on pain outcomes. Trajectory models, covarying for participant characteristics, were used to examine changes in self-efficacy and pain outcomes across time and whether self-efficacy mediated the pain trajectories. Results Mean time since diagnosis was 9.5 years, with 39.2% diagnosed with diffuse cutaneous systemic sclerosis. Greater self-efficacy was associated with less pain interference and intensity. Increasing age, female gender, finger ulcers, and small joint contractures were related to greater pain interference and intensity. Esophageal gastrointestinal symptoms were associated with more pain interference. Self-efficacy and pain trajectories remained stable across time, and self-efficacy did not mediate the pain trajectories. Discussion This study identified self-efficacy, age, gender, finger ulcers, small joint contractures, and esophageal gastrointestinal symptoms as important correlates associated with pain in patients with systemic sclerosis. In addition, this study found that self-efficacy and pain outcomes remained stable over time, providing important insights into the longitudinal pain experiences of patients with systemic sclerosis

Patterns of patient-reported symptoms and association with sociodemographic and systemic sclerosis disease characteristics: a scleroderma Patient-centered Intervention Network (SPIN) Cohort cross-sectional studyResearch in context

Summary: Background: Systemic sclerosis is a heterogenous disease in which little is known about patterns of patient-reported symptom clusters. We aimed to identify classes of individuals with similar anxiety, depression, fatigue, sleep disturbance, and pain symptoms and to evaluate associated sociodemographic and disease-related characteristics. Methods: This multi-centre cross-sectional study used baseline data from Scleroderma Patient-centered Intervention Network Cohort participants enrolled from 2014 to 2020. Eligible participants completed the PROMIS-29 v2.0 measure. Latent profile analysis was used to identify homogeneous classes of participants based on patterns of anxiety, depression, fatigue, sleep disturbance, and pain scores. Sociodemographic and disease-related characteristics were compared across classes. Findings: Among 2212 participants, we identified five classes, including four classes with “Low” (565 participants, 26%), “Normal” (651 participants, 29%), “High” (569 participants, 26%), or “Very High” (193 participants, 9%) symptom levels across all symptoms. Participants in a fifth class, “High Fatigue/Sleep/Pain and Low Anxiety/Depression” (234 participants, 11%) had similar levels of fatigue, sleep disturbance, and pain as in the “High” class but low anxiety and depression symptoms. There were significant and substantive trends in sociodemographic characteristics (age, education, race or ethnicity, marital or partner status) and increasing disease severity (diffuse disease, tendon friction rubs, joint contractures, gastrointestinal symptoms) across severity-based classes. Disease severity and sociodemographic characteristics of “High Fatigue/Sleep/Pain and Low Anxiety/Depression” class participants were similar to the “High” severity class. Interpretation: Most people with systemic sclerosis can be classified by levels of patient-reported symptoms, which are consistent across symptoms and highly associated with sociodemographic and disease-related variables, except for one group which reports low mental health symptoms despite high levels of other symptoms and substantial disease burden. Studies are needed to better understand resilience in systemic sclerosis and to identify and facilitate implementation of cognitive and behavioural strategies to improve coping and overall quality of life. Funding: National Institute of Nursing Research (F31NR019007), Canadian Institutes of Health Research, Arthritis Society Canada, the Lady Davis Institute for Medical Research, the Jewish General Hospital Foundation, McGill University, Scleroderma Society of Ontario, Scleroderma Canada, Sclérodermie Québec, Scleroderma Manitoba, Scleroderma Atlantic, Scleroderma Association of BC, Scleroderma SASK, Scleroderma Australia, Scleroderma New South Wales, Scleroderma Victoria, and Scleroderma Queensland