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  • Malcarne, Vanessa L  (13)
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  • 1
  • 2
    In: Rheumatology, 2017, Vol. 56(8), pp.1302-1311
    Description: 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 (〈0.25), small to moderate (0.25–0.45), moderate (0.46–0.55), moderate to large (0.56–0.75) and large (〉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.
    Keywords: Systemic Sclerosis ; Quality Of Life ; Promis ; Validation ; Clinical
    ISSN: 1462-0324
    E-ISSN: 1462-0332
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  • 3
    In: Rheumatology, 2018, Vol. 57(9), pp.1623-1631
    Description: Abstract Objectives The Scleroderma Patient-centered Intervention Network (SPIN) Cohort is a web-based cohort designed to collect patient-reported outcomes at regular intervals as a framework for conducting trials of psychosocial, educational, self-management and rehabilitation interventions for patients with SSc. The aim of this study was to present baseline demographic, medical and patient-reported outcome data of the SPIN Cohort and to compare it with other large SSc cohorts. Methods Descriptive statistics were used to summarize SPIN Cohort characteristics; these were compared with published data of the European Scleroderma Trials and Research (EUSTAR) and Canadian Scleroderma Research Group (CSRG) cohorts. Results Demographic, organ involvement and antibody profile data for SPIN (N = 1125) were generally comparable with that of the EUSTAR (N = 7319) and CSRG (N = 1390) cohorts. There was a high proportion of women and White patients in all cohorts, though relative proportions differed. Scl70 antibody frequency was highest in EUSTAR, somewhat lower in SPIN, and lowest in CSRG, consistent with the higher proportion of interstitial lung disease among dcSSc patients in SPIN compared with in CSRG (48.5 vs 40.3%). RNA polymerase III antibody frequency was highest in SPIN and remarkably lower in EUSTAR (21.1 vs 2.4%), in line with the higher prevalence of SSc renal crisis (4.5 vs 2.1%) in SPIN. Conclusion Although there are some differences, the SPIN Cohort is broadly comparable with other large prevalent SSc cohorts, increasing confidence that insights gained from the SPIN Cohort should be generalizable, although it should be noted that all three cohorts include primarily White participants.
    Keywords: Systemic Sclerosis ; Scleroderma ; Systemic Scleroderma ; Cohort
    ISSN: 1462-0324
    E-ISSN: 1462-0332
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  • 4
    Language: English
    In: Clinical and experimental rheumatology, 2016, Vol.34 Suppl 100(5), pp.92-99
    Description: 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. 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. 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. 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.
    Keywords: African Continental Ancestry Group -- Psychology ; Body Image -- Psychology ; European Continental Ancestry Group -- Psychology ; Health Knowledge, Attitudes, Practice -- Ethnology ; Scleroderma, Systemic -- Ethnology
    ISSN: 0392-856X
    E-ISSN: 1593098X
    Source: MEDLINE/PubMed (U.S. National Library of Medicine)
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  • 5
    Language: English
    In: BMJ Open, 7 August 2013, Vol.3(8)
    Description: Psychosocial and rehabilitation interventions are increasingly used to attenuate disability and improve health-related quality of life (HRQL) in chronic diseases, but are typically not available for patients with rare diseases. Conducting rigorous, adequately powered trials of these interventions for patients with rare diseases is difficult. The Scleroderma Patient-centered Intervention Network (SPIN) is an international collaboration of patient organisations, clinicians and researchers. The aim of SPIN is to develop a research infrastructure to test accessible, low-cost self-guided online interventions to reduce disability and improve HRQL for people living with the rare disease systemic sclerosis (SSc or scleroderma). Once tested, effective interventions will be made accessible through patient organisations partnering with SPIN.
    Keywords: Rheumatology ; Statistics & Research Methods ; Rehabilitation Medicine ; Mental Health ; Open Access ; Mental Health ; Patient-Centred Medicine ; Rehabilitation Medicine ; Research Methods
    ISSN: 2044-6055
    ISSN: 20446055
    E-ISSN: 2044-6055
    E-ISSN: 20446055
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  • 6
    Language: English
    In: Clinical and experimental rheumatology, 2012, Vol.30(2 Suppl 71), pp.S23-9
    Description: 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.
    Keywords: Cooperative Behavior ; Interdisciplinary Communication ; International Cooperation ; Quality of Life ; Health Services Needs and Demand -- Organization & Administration ; Patient-Centered Care -- Organization & Administration ; Scleroderma, Systemic -- Therapy
    ISSN: 0392-856X
    E-ISSN: 1593098X
    Source: MEDLINE/PubMed (U.S. National Library of Medicine)
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  • 7
    Language: English
    Description: Introduction: Psychosocial and rehabilitation interventions are increasingly used to attenuate disability and improve health-related quality of life (HRQL) in chronic diseases, but are typically not available for patients with rare diseases. Conducting rigorous, adequately powered trials of these interventions for patients with rare diseases is difficult. The Scleroderma Patient-centered Intervention Network (SPIN) is an international collaboration of patient organisations, clinicians and researchers. The aim of SPIN is to develop a research infrastructure to test accessible, low-cost self-guided online interventions to reduce disability and improve HRQL for people living with the rare disease systemic sclerosis (SSc or scleroderma). Once tested, effective interventions will be made accessible through patient organisations partnering with SPIN. Methods and analysis: SPIN will employ the cohort multiple randomised controlled trial (cmRCT) design, in which patients consent to participate in a cohort for ongoing data collection. The aim is to recruit 1500– 2000 patients from centres across the world within a period of 5 years (2013–2018). Eligible participants are persons ≥18 years of age with a diagnosis of SSc. In addition to baseline medical data, participants will complete patient-reported outcome measures every 3 months. Upon enrolment in the cohort, patients will consent to be contacted in the future to participate in intervention research and to allow their data to be used for comparison purposes for interventions tested with other cohort participants. Once nterventions are developed, patients from the cohort will be randomly selected and offered interventions as part of pragmatic RCTs. Outcomes from patients offered interventions will be compared with outcomes from trial-eligible patients who are not offered the interventions. Ethics and dissemination: The use of the cmRCT design, the development of self-guided online interventions and partnerships with patient organisations will allow SPIN to develop, rigourously test and effectively disseminate psychosocial and rehabilitation interventions for people with SSc.
    Keywords: Scleroderma ; Controlled Trial
    Source: Repositório Cientfico de Acesso Aberto de Portugal
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  • 8
    Language: English
    Description: 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.
    Keywords: Scleroderma ; Psychosocial ; Health-Related Quality Of Life ; Patient-Centred Care
    Source: Repositório Cientfico de Acesso Aberto de Portugal
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  • 9
    Language: English
    In: Arthritis Care & Research, 11/2018, Vol.70(11), pp.1646-1652
    Description: Objective Fear of negative evaluation is a common concern among individuals with visible differences but has received limited attention in systemic sclerosis (SSc), which can involve substantial changes to appearance. The Brief Fear of Negative Evaluation Scale (BFNE) was specifically designed to evaluate fear of negative evaluation. There are currently 3 versions of the BFNE with strong demonstrated measurement properties: two 8‐item versions (BFNE‐S, BFNE‐8) and one 12‐item version (BFNE‐II). The present study evaluated these versions in SSc, and identified the most appropriate version for use among SSc patients. Methods Participants were 1,010 patients with SSc enrolled in the Scleroderma Patient‐Centered Intervention Network cohort. Multiple group confirmatory factor analysis, Cronbach's alpha, and Pearson's product‐moment correlations were used to evaluate structural validity, internal consistency reliability, and convergent and divergent validity, respectively. Results Confirmatory factor analysis demonstrated that 1‐factor models fit acceptably well for the 12‐item BFNE‐II, the 8‐item BFNE‐S, and the 8‐item BFNE‐8. Additionally, all Cronbach's alphas demonstrated excellent internal consistency reliability (BFNE‐II = 0.98, BFNE‐S = 0.97, BFNE‐8 = 0.96), and all versions had comparable associations with measures of social anxiety, body‐related attitudes, depression, age, and education. Conclusion Psychometric support was found for all 3 versions of the BFNE, although the longer 12‐item BFNE‐II did not improve measurement compared to the shorter 8‐item versions (BFNE‐S and BFNE‐8). Of these 2, the BFNE‐S has been more widely studied, with strong validity data in a greater number of populations. Therefore, the BFNE‐S is recommended to assess fear of negative evaluation among patients with SSc.
    Keywords: Fear ; Patients ; Validity ; Systemic Sclerosis ; Scleroderma ; Discriminant Analysis ; Anxiety ; Scleroderma ; Factor Analysis ; Mental Depression;
    ISSN: 2151-464X
    E-ISSN: 2151-4658
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  • 10
    Language: English
    In: Body Image, 2017, Vol.20, p.99
    Description: Keywords Systemic sclerosis; Scleroderma; disfigurement; Body image avoidance; Body concealment; Measurement Highlights * Psychometrics of the Body Concealment Scale for Scleroderma (BCSS) were evaluated....
    Keywords: Scleroderma (Disease) – Analysis
    ISSN: 1740-1445
    E-ISSN: 18736807
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