Pain levels and associated factors in the Scleroderma Patient-centered Intervention Network (SPIN) cohort: a multicentre cross-sectional study

Yvonne C Lee; Rina S Fox; Linda Kwakkenbos; Brooke Levis; Marie-Eve Carrier; Joep Welling; Maureen Sauvé; Luc Mouthon; Andrea Benedetti; Susan J Bartlett; John Varga; Brett D Thombs; Scleroderma Patient-centered Intervention Network Investigators

doi:10.1016/S2665-9913(21)00318-0

Pain levels and associated factors in the Scleroderma Patient-centered Intervention Network (SPIN) cohort: a multicentre cross-sectional study

Lancet Rheumatol. 2021 Dec;3(12):e844-e854. doi: 10.1016/S2665-9913(21)00318-0.

Collaborators

Scleroderma Patient-centered Intervention Network Investigators:
Richard S Henry, Karen Gottesman, Marie Hudson, Laura K Hummers, Vanessa L Malcarne, Maureen D Mayes, Warren R Nielson, Robert Riggs, Shervin Assassi, Ghassan El-Baalbaki, Carolyn Ells, Kim Fligelstone, Catherine Fortuné, Tracy Frech, Amy Gietzen, Geneviève Guillot, Daphna Harel, Monique Hinchcliff, Sindhu R Johnson, Maggie Larche, Catarina Leite, Christelle Nguyen, Karen Nielsen, Janet Pope, François Rannou, Michelle Richard, Tatiana Sofia Rodriguez-Reyna, Anne A Schouffoer, Maria E Suarez-Almazor, Christian Agard, Nassim Ait Abdallah, Alexandra Albert, Marc André, Elana J Bernstein, Sabine Berthier, Lyne Bissonnette, Alessandra Bruns, Patricia Carreira, Marion Casadevall, Benjamin Chaigne, Lorinda Chung, Chase Correia, Benjamin Crichi, Christopher Denton, Robyn Domsic, James V Dunne, Bertrand Dunogue, Regina Fare, Dominique Farge-Bancel, Paul R Fortin, Jessica Gordon, Brigitte Granel-Rey, Genevieve Gyger, Eric Hachulla, Ariane L Herrick, Sabrina Hoa, Alena Ikic, Niall Jones, Suzanne Kafaja, Nader Khalidi, Marc Lambert, David Launay, Hélène Maillard, Nancy Maltez, Joanne Manning, Isabelle Marie, Maria Martin, Thierry Martin, Ariel Masetto, François Maurier, Arsene Mekinian, Sheila Melchor, Mandana Nikpour, Louis Olagne, Vincent Poindron, Susanna Proudman, Alexis Régent, Sébastien Rivière, David Robinson, Esther Rodriguez, Sophie Roux, Perrine Smets, Vincent Sobanski, Robert Spiera, Virginia Steen, Evelyn Sutton, Carter Thorne, Pearce Wilcox, Angelica Bourgeault, Mara Cañedo Ayala, Andrea Carboni Jiménez, Marie-Nicole Discepola, Maria Gagarine, Julia Nordlund, Nora Østbø

Affiliations

¹ Department of Medicine, Division of Rheumatology, Northwestern University Feinberg School of Medicine, Chicago, IL, USA. Electronic address: yvonne.lee@northwestern.edu.
² Department of Medical Social Sciences, Northwestern University Feinberg School of Medicine, Chicago, IL, USA.
³ Department of Clinical Psychology, Behavioural Science Institute, Radboud University, Nijmegen, Netherlands; Department of Medical Psychology, Radboud Institute for Health Sciences, Radboud University Medical Center, Nijmegen, Netherlands.
⁴ Centre for Prognosis Research, School of Medicine, Keele University, Staffordshire, UK.
⁵ Lady Davis Institute for Medical Research, Jewish General Hospital, Montreal, QC, Canada.
⁶ Dutch patient organization for systemic autoimmune diseases, Utrecht, Netherlands; Federation of European Scleroderma Associations, Brussels, Belgium.
⁷ Scleroderma Society of Ontario and Scleroderma Canada, Hamilton, ON, Canada.
⁸ Service de Medecine Interne, Centre de Reference Maladies Autoimmunes et Systemiques Rares d'Ile de France, Hopital Cochin, Assistance-Publique Hopitaux de Paris, Centre, Universite de Paris, Paris, France.
⁹ Department of Medicine, McGill University, Montreal, QC, Canada; Department of Epidemiology, Biostatistics, and Occupational Health, McGill University, Montreal, QC, Canada; Respiratory Epidemiology and Clinical Research Unit, McGill University Health Centre, Montreal, QC, Canada.
¹⁰ Department of Medicine, McGill University, Montreal, QC, Canada; Research Institute of the McGill University Health Centre, McGill University Health Centre, Montreal, QC, Canada.
¹¹ University of Michigan, Ann Arbor, MI, USA.
¹² Lady Davis Institute for Medical Research, Jewish General Hospital, Montreal, QC, Canada; Department of Medicine, McGill University, Montreal, QC, Canada; Department of Epidemiology, Biostatistics, and Occupational Health, McGill University, Montreal, QC, Canada; Department of Psychiatry, McGill University, Montreal, QC, Canada; Department of Psychology, McGill University, Montreal, QC, Canada; Department of Educational and Counselling Psychology, McGill University, Montreal, QC, Canada; Biomedical Ethics Unit, McGill University, Montreal, QC, Canada.

PMID: 38287631
DOI: 10.1016/S2665-9913(21)00318-0

Abstract

Background: Pain is an important and detrimental feature of systemic sclerosis but is often overlooked or deprioritised in research and clinical care. Raynaud's phenomenon, arthritis, and cutaneous ulcers are among the commonly reported disease manifestations of systemic sclerosis that could be associated with pain. We aimed to assess levels of pain intensity and interference and to evaluate disease factors associated with pain intensity and interference.

Methods: In this multicentre cross-sectional study, participants from the Scleroderma Patient-centered Intervention Network cohort who completed pain intensity and interference measures (Patient Reported Outcomes Information System-29 profile, version 2·0) as part of baseline assessments were included. Patients were recruited from 46 centres in Australia, Canada, France, Mexico, Spain, the UK, and the USA between April 15, 2014, and Jan 7, 2020. Eligible patients included those aged 18 years or older who met the criteria for systemic sclerosis devised by the American College of Rheumatology and the European League Against Rheumatism. Associations of pain intensity and pain interference with systemic sclerosis-related variables and overlap syndromes, controlling for sociodemographic variables, were assessed with multiple linear regression. Continuous independent variables were standardised.

Findings: Among 2157 participants with systemic sclerosis (268 [12%] males and 1889 [88%] females), 1870 (87%) reported mild, moderate, or severe pain (defined as ≥1 on a 0 to 10 scale), and 815 (38%) reported moderate or severe pain (defined as ≥5). Moreover, 757 (35%) participants reported moderate or severe pain interference. Greater pain intensity was independently associated with female sex (0·58 points [95% CI 0·26-0·90]), non-White race or ethnicity (0·50 points [0·21-0·79]), fewer years in formal education (0·30 points per SD [0·19-0·41]), country (reference: USA; Canada: 0·29 points [0·01-0·57] and UK: 0·58 points [0·21-0·95]), greater body-mass index (0·35 points per SD [0·24-0·45]); joint contractures (0·67 points [0·39-0·94]), digital ulcers (0·33 points [0·10-0·55]), gastrointestinal involvement (0·66 points [0·33-0·98]), skin involvement (measured using modified Rodnan skin score; 0·22 points per SD [0·10-0·35]), rheumatoid arthritis (0·96 points [0·50-1·43]), and Sjögren's syndrome (0·42 points [0·01-0·83]). Pain interference results were similar.

Interpretation: Pain is common among people with systemic sclerosis. Controlling for sociodemographic variables, greater pain was associated with multiple systemic sclerosis-related manifestations, including joint contractures, digital ulcers, gastrointestinal involvement, skin involvement, and the presence of overlap syndromes. Health-care providers should work with patients to address pain, including identifying and addressing systemic sclerosis manifestations associated with their pain, and supporting behavioural approaches to minimise impact on function and quality of life.

Funding: Canadian Institutes of Health Research, Arthritis Society, The Lady Davis Institute for Medical Research of the Jewish General Hospital, Jewish General Hospital Foundation, McGill University, Scleroderma Society of Ontario, Scleroderma Canada, Sclérodermie Québec, Scleroderma Manitoba, Scleroderma Atlantic, Scleroderma Association of BC, Scleroderma SASK, Scleroderma Australia, Scleroderma New South Wales, Scleroderma Victoria, and Scleroderma Queensland.