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. 2024 Feb 29;10(1):e003876.
doi: 10.1136/rmdopen-2023-003876.

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

Tiffany Dal Santo  1   2 , Danielle Rice  3   4 , Marie-Eve Carrier  1 , Gabrielle Virgili-Gervais  1 , Brooke Levis  1 , Linda Kwakkenbos  5   6   7 , Susan J Bartlett  8   9 , Amy Gietzen  10 , Karen Gottesman  11 , Genevieve Guillot  12 , Marie Hudson  1   8 , Laura K Hummers  13 , Vanessa Malcarne  14   15 , Maureen Mayes  16 , Luc Mouthon  17   18 , Michelle Richard  19   20 , Maureen Sauve  20   21 , Robyn Wojeck  22 , Marie-Claude Geoffroy  2   23 , Andrea Benedetti  8   9   24   25 , Brett Thombs  26   2   8   25   27   28 ; SPIN investigators
Collaborators, Affiliations

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

Tiffany Dal Santo et al. RMD Open. .

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.

Keywords: Patient Reported Outcome Measures; Risk Factors; Scleroderma, Systemic.

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Conflict of interest statement

Competing interests: None declared.

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