Search

Objective: Valid measures of appearance concern are needed in systemic sclerosis (SSc), a rare, disfiguring autoimmune disease. The Derriford Appearance Scale-24 (DAS-24) assesses appearance-related distress related to visible differences. There is uncertainty regarding its factor structure, possibly due to its scoring method., Design: Cross-sectional survey., Setting: Participants with SSc were recruited from 27 centres in Canada, the USA and the UK. Participants who self-identified as having visible differences were recruited from community and clinical settings in the UK., Participants: Two samples were analysed (n=950 participants with SSc; n=1265 participants with visible differences)., Primary and Secondary Outcome Measures: The DAS-24 factor structure was evaluated using two scoring methods. Convergent validity was evaluated with measures of social interaction anxiety, depression, fear of negative evaluation, social discomfort and dissatisfaction with appearance., Results: When items marked by respondents as 'not applicable' were scored as 0, per standard DAS-24 scoring, a one-factor model fit poorly; when treated as missing data, the one-factor model fit well. Convergent validity analyses revealed strong correlations that were similar across scoring methods., Conclusions: Treating 'not applicable' responses as missing improved the measurement model, but did not substantively influence practical inferences that can be drawn from DAS-24 scores. Indications of item redundancy and poorly performing items suggest that the DAS-24 could be improved and potentially shortened., Competing Interests: Competing interests: The authors have read and understood the BMJ policy on declaration of interests and declare the following interests: the DAS-24 is commercially available from TPM., (© Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2018. All rights reserved. No commercial use is permitted unless otherwise expressly granted.)

Objective: Peer-led support groups are an important resource for many people with scleroderma (systemic sclerosis; SSc). Little is known, however, about barriers to participation. The objective of this study was to identify reasons why some people with SSc do not participate in SSc support groups., Methods: A 21-item survey was used to assess reasons for nonattendance among SSc patients in Canada and the US. Exploratory factor analysis (EFA) was conducted, using the software MPlus 7, to group reasons for nonattendance into themes., Results: A total of 242 people (202 women) with SSc completed the survey. EFA results indicated that a 3-factor model best described the data (χ 2 [150] = 302.7; P < 0.001; Comparative Fit Index = 0.91, Tucker-Lewis Index = 0.88, root mean square error of approximation = 0.07, factor intercorrelations 0.02-0.43). The 3 identified themes, reflecting reasons for not attending SSc support groups were personal reasons (9 items; e.g., already having enough support), practical reasons (7 items; e.g., no local support groups available), and beliefs about support groups (5 items; e.g., support groups are too negative). On average, respondents rated 4.9 items as important or very important reasons for nonattendance. The 2 items most commonly rated as important or very important were 1) already having enough support from family, friends, or others, and 2) not knowing of any SSc support groups offered in my area., Conclusion: SSc organizations may be able to address limitations in accessibility and concerns about SSc support groups by implementing online support groups, better informing patients about support group activities, and training support group facilitators., (© 2017, American College of Rheumatology.)

Objectives: Appearance concerns are common in systemic sclerosis (SSc) and have been linked to younger age and more severe disease. No study has examined their association with sex or race/ethnicity., Methods: SSc patients were sampled from the Scleroderma Patient-centered Intervention Network Cohort. Presence of appearance concerns was assessed with a single item, and medical and sociodemographic information were collected., Results: Of 644 patients, appearance concerns were present in 72%, including 421 of 565 women (75%), 42 of 79 men (53%), 392 of 550 patients who identified as White (71%), 35 of 41 who identified as Black (85%), and 36 of 53 who identified as another race/ethnicity (68%). In multivariate analysis, women had significantly greater odds of reporting appearance concerns than men (odds ratio (OR)=2.97, 95% confidence interval (CI)=1.78-4.95, p<.001). Black patients had significantly greater odds of appearance concerns than White patients in unadjusted (OR=2.64, 95% CI=1.01-6.34, p=.030), but not multivariate analysis (OR=1.76, 95% CI=0.67-4.60, p=.250). Compared to a general population sample, appearance concerns were substantially more common in SSc, particularly for men across all age groups and for younger women. The most commonly reported features of concern were related to the face and head, followed by the hands and fingers; this did not differ by sex or race/ethnicity., Conclusions: Appearance concerns were common in SSc. Women were substantially more likely than men to have appearance concerns. Although non-significant in multivariate analysis, Black patients were more likely to have concerns than White patients, likely due to more severe changes in appearance.

Objective: Depression is common in many rheumatic diseases and is associated with poor prognosis. No studies of patients with any rheumatic diseases, however, have assessed the stability of major depressive disorder (MDD) diagnoses over time. The objective of the present study was to assess the stability of MDD diagnoses among patients with systemic sclerosis (SSc; scleroderma), a rare autoimmune rheumatic disease, across 2 assessments approximately 1 month apart., Methods: SSc patients were recruited from 7 Canadian Scleroderma Research Group Registry sites (April 2009 to June 2012). Current (30-day) MDD was assessed with the Composite International Diagnostic Interview at baseline and approximately 1 month later., Results: Among 309 patients with baseline assessments who received followup assessments an average of 34 days later, prevalence of 30-day MDD was 4% (95% confidence interval [95% CI] 2%-7%; n = 12) at baseline and 5% (95% CI 3%-8%; n = 16) at followup. Only 3 of 12 patients (25% [95% CI 9%-53%]) with MDD at baseline had MDD 1 month later., Conclusion: Most patients with SSc who meet criteria for MDD appear to experience mild, time-limited episodes of low mood that often resolve on their own without specific treatment. Consistent with international guidelines on depression management in nonpsychiatric settings, "watchful waiting" or "active monitoring" is a good strategy for SSc patients with mild depression to avoid unnecessary treatment among those whose symptoms may be transient and may resolve without medical intervention., (Copyright © 2015 by the American College of Rheumatology.)

Objectives: Patients with SSc experience a range of problems affecting their quality of life, but only one small study has assessed the prevalence of major depressive disorder (MDD) in SSc. The objectives of this study were: (i) to assess the prevalence of current (30-day), 12-month and lifetime MDD in a large sample of Canadian SSc patients; and (ii) to investigate socio-demographic and disease factors associated with 12-month MDD., Methods: SSc patients were recruited from seven Canadian Scleroderma Research Group Registry sites (April 2009 to May 2012). MDD and history of a prior depression episode (major or minor) were assessed with the Composite International Diagnostic Interview., Results: Among 345 patients, prevalence of 30-day, 12-month and lifetime MDD was 3.8% (95% CI 2.2%, 6.3%; n = 13), 10.7% (95% CI 7.9%, 14.4%; n = 37) and 22.9% (95% CI 18.8%, 27.6%; n = 79), respectively. Patients with 12-month MDD had more severe gastrointestinal track involvement than patients without 12-month MDD, but there were no other significant differences on socio-demographic or disease variables. Among patients with 12-month MDD, 81.1% (95% CI 65.8%, 90.3%) reported a prior depression episode compared with 3.9% (95% CI 2.2%, 6.7%) among patients without 12-month MDD (P < 0.01)., Conclusion: The prevalence of 30-day, 12-month and lifetime MDD among Canadian SSc patients is approximately twice that of the Canadian general population and somewhat higher than in arthritis. SSc patients face a range of psychosocial problems and may benefit from a broad supportive care approach.

Systemic sclerosis (SSc), or scleroderma, is a chronic multisystem autoimmune disorder characterised by thickening and fibrosis of the skin and by the involvement of internal organs such as the lungs, kidneys, gastrointestinal tract, and heart. Because there is no cure, feasibly-implemented and easily accessible evidence-based interventions to improve health-related quality of life (HRQoL) are needed. Due to a lack of evidence, however, specific recommendations have not been made regarding non-pharmacological interventions (e.g. behavioural/psychological, educational, physical/occupational therapy) to improve HRQoL in SSc. The Scleroderma Patient-centred Intervention Network (SPIN) was recently organised to address this gap. SPIN is comprised of patient representatives, clinicians, and researchers from Canada, the USA, and Europe. The goal of SPIN, as described in this article, is to develop, test, and disseminate a set of accessible interventions designed to complement standard care in order to improve HRQoL outcomes in SSc.