Factors associated with satisfaction with social roles and activities among people with systemic sclerosis: a Scleroderma Patient-centered Intervention Network (SPIN) cohort cross-sectional study

Author:

Dal Santo Tiffany,Rice Danielle,Carrier Marie-Eve,Virgili-Gervais Gabrielle,Levis Brooke,Kwakkenbos Linda,Bartlett Susan JORCID,Gietzen Amy,Gottesman Karen,Guillot Genevieve,Hudson Marie,Hummers Laura K,Malcarne Vanessa,Mayes Maureen,Mouthon Luc,Richard Michelle,Sauve Maureen,Wojeck Robyn,Geoffroy Marie-Claude,Benedetti Andrea,Thombs BrettORCID

Abstract

Objective The objectives were to (1) compare satisfaction with social roles and activities in a large multinational systemic sclerosis (SSc) cohort to general population normative data and (2) identify sociodemographic, lifestyle and SSc disease factors associated with satisfaction with social roles and activities. Methods Participants in the Scleroderma Patient-centered Intervention Network Cohort completed the Patient Reported Outcomes Information System Version 2 satisfaction with social roles and activities domain questionnaire. Multivariable regression was used to assess associations with sociodemographic, lifestyle and disease factors. Results Among 2385 participants, mean satisfaction with social roles and activities T-score (48.1, SD=9.9) was slightly lower than the US general population (mean=50, SD=10). Factors independently associated with satisfaction were years of education (0.54 per SD, 95% CI 0.14 to 0.93); non-White race or ethnicity (−1.13, 95% CI −2.18 to –0.08); living in Canada (−1.33, 95% CI −2.40 to –0.26 (reference USA)) or the UK (−2.49, 95% CI −3.92 to –1.06); body mass index (−1.08 per SD, 95% CI −1.47 to –0.69); gastrointestinal involvement (−3.16, 95% CI −4.27 to –2.05); digital ulcers (−1.90, 95% CI −3.05 to –0.76); moderate (−1.62, 95% CI −2.78 to –0.45) or severe (−2.26, 95% CI −3.99 to –0.52) small joint contractures; interstitial lung disease (−1.11, 95% CI −1.97 to –0.25); pulmonary arterial hypertension (−2.69, 95% CI −4.08 to –1.30); rheumatoid arthritis (−2.51, 95% CI −4.28 to –0.73); and Sjogren’s syndrome (−2.42, 95% CI −3.96 to –0.88). Conclusion Mean satisfaction with social roles and activities is slightly lower in SSc than the general population and associated with multiple sociodemographic and disease factors.

Funder

Scleroderma Queensland

Scleroderma Manitoba

McGill University

Canada Research Chairs

Scleroderma Society of Ontario

Scleroderma Association of British Columbia

Scleroderma Canada

Scleroderma SASK

Canadian Institutes of Health Research

Scleroderma Australia

Sclérodermie Québec

Scleroderma New South Wales

Lady Davis Institute for Medical Research

Scleroderma Victoria

Fondation de l'Hôpital général juif

Scleroderma Atlantic

Publisher

BMJ

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