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,
- Linda Kwakkenbos,
- Marie-Eve Carrier,
- Karen Nielsen,
- Susan J Bartlett,
- Karen Gottesman,
- Maureen Sauve,
- 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
Affiliations
- Arsène Mekinian
- Internal Medicine, DHUi2B, Saint Antoine Hospital, AP HP, Université Pierre et Marie Curie, Paris, France
- Thierry Martin
- Eric Hachulla
- Department of Internal Medicine and Clinical Immunology, Lille University Hospital, Lille, France
- Carter Thorne
- Danielle Rice
- Department of Psychology, St Joseph`s Healthcare Hamilton, Hamilton, Ontario, Canada
- Andrea Benedetti
- Department of Medicine, McGill University, Montreal, Québec, Canada
- Brooke Levis
- Lady Davis Institute for Medical Research, Montreal, Québec, Canada
- Virginia Steen
- Paul R Fortin
- Vincent Poindron
- Aurélien Guffroy
- David Launay
- Luc Mouthon
- Service de Médecine Interne, Centre de Référence Maladies Autoimmunes Systémiques Rares d`Ile de France, Hôpital Cochin, Paris, France
- Mandana Nikpour
- John Varga
- Benjamin Chaigne
- Sindhu R Johnson
- Sébastien Rivière
- Michael Hughes
- Daphna Harel
- Linda Kwakkenbos
- Department of Clinical Psychology, Radboud Universiteit, Nijmegen, The Netherlands
- Marie-Eve Carrier
- Lady Davis Institute for Medical Research, Montreal, Québec, Canada
- Karen Nielsen
- Susan J Bartlett
- Department of Medicine, McGill University, Montreal, Québec, Canada
- Karen Gottesman
- National Scleroderma Foundation, Los Angeles, California, USA
- Maureen Sauve
- Slceroderma Canada, Hamilton, Ontario, Canada
- Ghassan El-Baalbaki
- Kim Fligelstone
- Catherine Fortune
- Tracy Frech
- Marie Hudson
- Lady Davis Institute for Medical Research, Montreal, Québec, Canada
- Maggie Larche
- Catarina Leite
- Janet Pope
- Department of Medicine, Western University, London, Ontario, Canada
- Anne A Schouffoer
- Maria E Suarez-Almazor
- Christian Agard
- Internal Medicine, Nantes University Hospital, Nantes, France
- Marc André
- Sabine Berthier
- Internal Medicine, Bocage Hospital, Dijon, France
- 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
- Internal Medicine Department, Centre Clermont-Ferrand University Hospital, Clermont-Ferrand, France
- Vincent Sobanski
- Robert Spiera
- Evelyn Sutton
- Pearce Wilcox
- Laurent Alric
- Grégory Pugnet
- INSERM UMR1027, Toulouse, France
- François Rannou
- Amy Gietzen
- National Scleroderma Foundation Tri-State Chapter, Buffalo, New York, USA
- Christelle Nguyen
- Michelle Richard
- Scleroderma Atlantic, Halifax, Nova Scotia, Canada
- Nancy Maltez
- Isabelle Marie
- Mara Cañedo Ayala
- Geneviève Guillot
- Sclérodermie Québec, Longueuil, Québec, Canada
- Elana J Bernstein
- Brett Thombs
- Lady Davis Institute for Medical Research, Montreal, Québec, Canada
- Paul Legendre
- Thylbert Deltombe
- Sabrina Hoa
- Laura K Hummers
- The Johns Hopkins University School of Medicine, Baltimore, Maryland, USA
- Sophie Blaise
- Yvonne C Lee
- Louis Olagne
- Marie-Claude Geoffroy
- Department of Psychiatry, McGill University, Montreal, Québec, Canada
- Richard S Henry
- Robyn Wojeck
- University of Rhode Island, Kingston, Rhode Island, USA
- Maureen Mayes
- University of Texas McGovern Medical School, Houston, Texas, USA
- Tiffany Dal Santo
- Lady Davis Institute for Medical Research, Montreal, Québec, Canada
- Kimberly Lakin
- Gabrielle Virgili-Gervais
- Lady Davis Institute for Medical Research, Montreal, Québec, Canada
- Vanessa Malcarne
- Department of Psychology, San Diego State University, San Diego, California, USA
- 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
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Vol. 10,
no. 1
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.