Non-drug approaches to treating Raynaud's phenomenon

Raynaud's phenomenon (RP) attacks are thought to be triggered by a number of factors, including changes in environmental temperature, trauma to the fingers, smoking, some medications, and emotional distress. The first step in treating RP typically involves lifestyle modification to reduce exposure to potential triggers. To be able to understand and reduce or prevent exposure to triggers and to, thus, reduce the frequency of attacks, patients should be educated about RP and possible precipitating factors for episodes. Non-drug approaches to treating RP, in addition to or as part of patient education, could potentially include: (1) avoiding exposure to cold and maintaining whole body and digital warmth; (2) avoiding medications that may trigger attacks; (3) smoking cessation; (4) behavioral interventions to manage emotional stress; and (5) other approaches, such as laser therapy or acupuncture. In this chapter, evidence related to possible non-drug approaches to treating RP that have been suggested or tested is discussed

Psychosocial issues and care for patients with systemic sclerosis

People living with chronic medical conditions face challenges not only with respect to their physical health but also to their emotional and social well-being. Chronic conditions, such as systemic sclerosis (SSc or scleroderma), often result in significant disruptions to activities of daily living, including employment and homecare, as well as social and leisure activities, and can lead to reduced health-related quality of life (HRQL). Therefore, it is important to identify factors associated with decreased HRQL and psychosocial functioning in SSc and to develop and implement strategies to help individuals with the disease manage these problems. Traditionally, there has been little research on patient-reported outcomes in SSc, and this has posed a significant clinical challenge to the field. However, recent research has highlighted important problems that have an influence on HRQL for many people living with SSc, including depression, anxiety and fear of disease progression, fatigue and sleep problems, pain, pruritus (itch), body image distress, and sexual dysfunction

Development and validation of the Body Concealment Scale for Scleroderma

Item does not contain fulltextObjective: Body concealment is a component of social avoidance among people with visible differences from disfiguring conditions, including systemic sclerosis (SSc). The study objective was to develop a measure of body concealment related to avoidance behaviors in SSc. Methods: Initial items for the Body Concealment Scale for Scleroderma (BCSS) were selected using item analysis in a development sample of 93 American SSc patients. The factor structure of the BCSS was evaluated in 742 Canadian patients with single-factor, 2-factor, and bifactor confirmatory factor analysis models. Convergent and divergent validity were assessed by comparing the BCSS total score with the Brief-Satisfaction with Appearance Scale (Brief-SWAP) and measures of depressive symptoms and pain. Results: A 2-factor model (Comparative Fit Index [CFI] 0.99, Tucker-Lewis Index [TLI] 0.98, Root Mean Square Error of Approximation [RMSEA] 0.08) fit substantially better than a 1-factor model (CFI 0.95, TLI 0.94, RMSEA 0.15) for the 9-item BCSS, but the Concealment with Clothing and Concealment of Hands factors were highly correlated (alpha = 0.79). The bifactor model (CFI 0.99, TLI 0.99, RMSEA 0.08) also fit well. In the bifactor model, the omega coefficient was high for the general factor (omega = 0.80), but low for the Concealment with Clothing (omega = 0.01) and Concealment of Hands (omega = 0.33) factors. The BCSS total score correlated more strongly with the Brief-SWAP Social Discomfort (r = 0.59) and Dissatisfaction with Appearance (r = 0.53) subscales than with measures of depressive symptoms and pain. Conclusion: The BCSS sum score is a valid indicator of body concealment in SSc that extends the concepts of body concealment and avoidance beyond the realms of body shape and weight to concerns of individuals with visible differences from SSc.8 p

Validation of the Self-Efficacy for Managing Chronic Disease Scale: A Scleroderma Patient-Centered Intervention Network cohort study

Objective: Self-management programs for patients with chronic illnesses, including rheumatic diseases, seek to enhance self-efficacy for performing health management behaviors. No measure of self-efficacy has been validated for patients with systemic sclerosis (SSc; scleroderma). The objective of this study was to assess the validity and internal consistency reliability of the Self-Efficacy for Managing Chronic Disease (SEMCD) scale in SSc. Methods: English-speaking SSc patients enrolled in the Scleroderma Patient-centered Intervention Network Cohort who completed the SEMCD scale at their baseline assessment between March 2014 and June 2015 were included. Patients were enrolled from 21 sites in Canada, the US, and the UK. Confirmatory factor analysis (CFA) was used to evaluate the factor structure of the SEMCD scale. Cronbach's alpha was calculated to assess internal consistency reliability. Hypotheses on the direction and magnitude of Pearson's correlations with psychological and physical outcome measures were formulated and tested to examine convergent validity. Results: A total of 553 patients were included. CFA supported the single-factor structure of the SEMCD scale (Tucker Lewis Index = 0.99, comparative fit index = 0.99, root mean square error of approximation = 0.10). Internal consistency was high (alpha = 0.93), and correlations with measures of psychological and physical functioning were moderate to large (|r| = 0.48-0.67, P < 0.001), confirming study hypotheses. Conclusion: Scores from the SEMCD scale are valid for measuring self-efficacy in patients with SSc, and results support using the scale as an outcome measure to evaluate the effectiveness of self-management programs in SSc

Performance of the Patient-Reported Outcomes Measurement Information System-29 in scleroderma: A Scleroderma Patient-centered Intervention Network Cohort Study

Contains fulltext : 175251.pdf (publisher's version ) (Closed access)Objective. The Patient-Reported Outcomes Measurement Information System (PROMIS)-29 assesses seven health-related quality of life domains plus pain intensity. The objective was to examine PROMIS-29v2 validity and explore clinical associations in patients with SSc. Methods. English-speaking SSc patients in the Scleroderma Patient-centered Intervention Network Cohort from 26 sites in Canada, the USA and the UK completed the PROMIS-29v2 between July 2014 and November 2015. Enrolling physicians provided medical data. To examine convergent validity, hypotheses on the direction and magnitude of correlations with legacy measures were tested. For clinical associations, t-tests were conducted for dichotomous variables and PROMIS-29v2 domain scores. Effect sizes (ESs) were labelled as small (0.75). Results. There were 696 patients (87% female), mean (s.d.) disease duration 11.6 (8.7) years, 57% with limited cutaneous subtype. Validity indices were consistent with seven of nine hypotheses (|r| =0.51-0.87, P < 0.001), with minor divergence for two hypotheses. Gastrointestinal involvement was associated with significantly worse outcomes for all eight PROMIS-29v2 domains (moderate or moderate to large ES in six of eight). Presence of joint contractures was associated with significant decrements in seven domains (small or small to moderate ESs). Skin thickening, diffuse cutaneous subtype and presence of overlap syndromes were significantly associated (small or small to moderate ESs) with five or six domains. Conclusion. This study further establishes the validity of the PROMIS-29v2 in SSc and underlines the importance of gastrointestinal symptoms and joint contractures in reduced health-related quality of life.10 p

Performance of the Patient-Reported Outcomes Measurement Information System-29 in scleroderma: A Scleroderma Patient-centered Intervention Network Cohort Study [Correction]

Item does not contain fulltextIn the original article [https://doi.org/10.1093/rheumatology/kex055], the SPIN Investigators were not listed; instead they were listed in the supplementary data file. They have now been moved to the Acknowledgements section of the main article so that they can be tagged for inclusion as collaborators in PubMed.05 juni 20191 p