RMD Open (Feb 2024)

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

  • Arsène Mekinian,
  • Thierry Martin,
  • Eric Hachulla,
  • Carter Thorne,
  • Danielle Rice,
  • Andrea Benedetti,
  • Brooke Levis,
  • Virginia Steen,
  • Paul R Fortin,
  • Vincent Poindron,
  • Aurélien Guffroy,
  • David Launay,
  • Luc Mouthon,
  • Mandana Nikpour,
  • John Varga,
  • Benjamin Chaigne,
  • Sindhu R Johnson,
  • Sébastien Rivière,
  • Michael Hughes,
  • Daphna Harel,
  • Marie-Eve Carrier,
  • Karen Nielsen,
  • Susan J Bartlett,
  • Karen Gottesman,
  • Ghassan El-Baalbaki,
  • Kim Fligelstone,
  • Catherine Fortune,
  • Tracy Frech,
  • Marie Hudson,
  • Maggie Larche,
  • Catarina Leite,
  • Janet Pope,
  • Anne A Schouffoer,
  • Maria E Suarez-Almazor,
  • Christian Agard,
  • Marc André,
  • Sabine Berthier,
  • Lyne Bissonnette,
  • Alessandra Bruns,
  • Patricia Carreira,
  • Marion Casadevall,
  • Lorinda Chung,
  • Christopher Denton,
  • Robyn Domsic,
  • James V Dunne,
  • Bertrand Dunogue,
  • Regina Fare,
  • Dominique Farge-bancel,
  • Jessica Gordon,
  • Brigitte Granel-Rey,
  • Genevieve Gyger,
  • Monique Hinchcliff,
  • Alena Ikic,
  • Niall Jones,
  • Suzanne Kafaja,
  • Nader Khalidi,
  • Marc Lambert,
  • Hélène Maillard,
  • Joanne Manning,
  • Ariel Masetto,
  • François Maurier,
  • Susanna Proudman,
  • Alexis Régent,
  • David Robinson,
  • Sophie Roux,
  • Perrine Smets,
  • Vincent Sobanski,
  • Robert Spiera,
  • Evelyn Sutton,
  • Pearce Wilcox,
  • Laurent Alric,
  • Grégory Pugnet,
  • François Rannou,
  • Amy Gietzen,
  • Christelle Nguyen,
  • Michelle Richard,
  • Nancy Maltez,
  • Isabelle Marie,
  • Mara Cañedo Ayala,
  • Geneviève Guillot,
  • Elana J Bernstein,
  • Brett Thombs,
  • Paul Legendre,
  • Thylbert Deltombe,
  • Sabrina Hoa,
  • Laura K Hummers,
  • Sophie Blaise,
  • Yvonne C Lee,
  • Louis Olagne,
  • Marie-Claude Geoffroy,
  • Richard S Henry,
  • Robyn Wojeck,
  • Maureen Mayes,
  • Tiffany Dal Santo,
  • Kimberly Lakin,
  • Gabrielle Virgili-Gervais,
  • Vanessa Malcarne,
  • Claire E Adams,
  • Rodriguez-Reyna Tatiana Sofia,
  • Floryan Beaslay,
  • Eva Bories,
  • Carlotta Cacciatore,
  • Benjamin Crichi,
  • Tannvir Desroche,
  • Loraine Gauzère,
  • Anne Gerber,
  • Maria Martin Lopez,
  • Sheila Melchor Díaz,
  • Morgane Mourguet,
  • Loïc Raffray,
  • Frederic Renou,
  • Esther Rodríguez Almazar,
  • Damien Vagner,
  • Vanessa Cook,
  • Sophie Hu,
  • Elsa-Lynn Nassar,
  • Marieke Alexandra Neyer,
  • Sabrina Provencher

DOI
https://doi.org/10.1136/rmdopen-2023-003876
Journal volume & issue
Vol. 10, no. 1

Abstract

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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.