Multicenter Study

. 2025 May 1;64(5):2810-2820.

doi: 10.1093/rheumatology/keae570.

Fatigue levels and associated factors in systemic sclerosis: a cross-sectional study of 2385 SPIN Cohort participants

Linda Kwakkenbos^{1

2

3}, Brooke Levis⁴, Richard S Henry⁴, Gabrielle Virgili-Gervais⁴, Marie-Eve Carrier⁴, Susan J Bartlett^{5

6}, Amy Gietzen⁷, Karen Gottesman⁸, Geneviève Guillot⁹, Amanda Lawrie-Jones^{10

11}, Laura K Hummers¹², Vanessa L Malcarne^{13

14}, Maureen D Mayes¹⁵, Michelle Richard¹⁶, Robyn K Wojeck¹⁷, Maureen Worron-Sauvé^{18

19}, Marie Hudson^{4

5}, Luc Mouthon^{20

21}, Andrea Benedetti^{5

22

23}, Brett D Thombs^{4

5

24

25

26}; Scleroderma Patient-centered Intervention Network Investigators

Collaborators, Affiliations

Collaborators

Scleroderma Patient-centered Intervention Network Investigators:
Claire E Adams, Ghassan El-Baalbaki, Kim Fligelstone, Tracy Frech, Daphna Harel, Monique Hinchcliff, Sindhu R Johnson, Maggie Larche, Catarina Leite, Christelle Nguyen, Karen Nielsen, Janet Pope, François Rannou, Tatiana Sofia Rodriguez-Reyna, Anne A Schouffoer, Maria E Suarez-Almazor, Christian Agard, Laurent Alric, Marc André, Floryan Beaslay, Elana J Bernstein, Sabine Berthier, Lyne Bissonnette, Sophie Blaise, Eva Bories, Alessandra Bruns, Carlotta Cacciatore, Patricia Carreira, Marion Casadevall, Benjamin Chaigne, Lorinda Chung, Benjamin Crichi, Thylbert Deltombe, Christopher Denton, Tannvir Desroche, Robyn Domsic, James V Dunne, Bertrand Dunogue, Regina Fare, Dominique Farge-Bancel, Paul R Fortin, Loraine Gauzère, Anne Gerber, Jessica K Gordon, Brigitte Granel-Rey, Aurélien Guffroy, Geneviève Gyger, Eric Hachulla, Sabrina Hoa, Michael Hughes, Alena Ikic, Nader Khalidi, Kimberly S Lakin, Marc Lambert, David Launay, Yvonne C Lee, Paul Legendre, Hélène Maillard, Nancy Maltez, Joanne Manning, Isabelle Marie, Maria Martin Lopez, Thierry Martin, Ariel Masetto, Arsène Mekinian, Sheila Melchor Díaz, Morgane Mourguet, Mandana Nikpour, Louis Olagne, Vincent Poindron, Susanna Proudman, Grégory Pugnet, Loïc Raffray, Alexis Régent, Frederic Renou, Sébastien Rivière, David Robinson, Esther Rodríguez Almazar, Sophie Roux, Perrine Smets, Vincent Sobanski, Robert F Spiera, Virginia Steen, Evelyn Sutton, Carter Thorne, Damien Vagner, John Varga, Pearce Wilcox, Mara Cañedo Ayala, Vanessa Cook, Cassidy Dal Santo, Tiffany Dal Santo, Monica D'onofrio, Sophie Hu, Elsa-Lynn Nassar, Marieke Alexandra Neyer, Sabrina Provencher

Affiliations

¹ Department of Clinical Psychology, Behavioural Science Institute, Radboud University, Nijmegen, the Netherlands.
² Department of IQ Health, Radboud University Medical Center, Nijmegen, the Netherlands.
³ Centre for Mindfulness, Department of Psychiatry, Radboud University Medical Center, Nijmegen, the Netherlands.
⁴ Lady Davis Institute for Medical Research, Jewish General Hospital, Montreal, QC, Canada.
⁵ Department of Medicine, McGill University, Montreal, QC, Canada.
⁶ Research Institute of the McGill University Health Centre, Montreal, QC, Canada.
⁷ National Scleroderma Foundation, Tri-State Chapter, Buffalo, NY, USA.
⁸ National Scleroderma Foundation, Los Angeles, CA, USA.
⁹ Sclérodermie Québec, Longueuil, QC, Canada.
¹⁰ Scleroderma Australia, Melbourne, VIC, Australia.
¹¹ Scleroderma Victoria, Melbourne, VIC, Australia.
¹² Department of Medicine, Division of Rheumatology Johns Hopkins University School of Medicine, Baltimore, MD, USA.
¹³ Department of Psychology, San Diego State University, San Diego, CA, USA.
¹⁴ San Diego Joint Doctoral Program in Clinical Psychology, San Diego State University/University of California, San Diego, CA, USA.
¹⁵ Department of Internal Medicine, University of Texas McGovern School of Medicine, Houston, TX, USA.
¹⁶ Scleroderma Atlantic, Halifax, NS, Canada.
¹⁷ College of Nursing, University of Rhode Island, Kingston, RI, USA.
¹⁸ Scleroderma Society of Ontario, Hamilton, ON, Canada.
¹⁹ Scleroderma Canada, Hamilton, ON, Canada.
²⁰ Service de Médecine Interne, Centre de Référence Maladies Autoimmunes et Autoinflammatoires Systémiques Rares d'Ile de France, de l'Est et de l'Ouest, Hôpital Cochin, Paris, France.
²¹ Assistance Publique Hopitaux de Paris-Centre, Hôpital Cochin, Université Paris Cité, Paris, France.
²² Department of Epidemiology, Biostatistics, and Occupational Health, McGill University, Montreal, QC, Canada.
²³ Respiratory Epidemiology and Clinical Research Unit, McGill University Health Centre, Montreal, QC, Canada.
²⁴ Department of Psychiatry, McGill University, Montreal, QC, Canada.
²⁵ Department of Psychology, McGill University, Montreal, QC, Canada.
²⁶ Biomedical Ethics Unit, McGill University, Montreal, QC, Canada.

PMID: 39447026
PMCID: PMC12048050
DOI: 10.1093/rheumatology/keae570

Multicenter Study

Fatigue levels and associated factors in systemic sclerosis: a cross-sectional study of 2385 SPIN Cohort participants

Linda Kwakkenbos et al. Rheumatology (Oxford). 2025.

. 2025 May 1;64(5):2810-2820.

doi: 10.1093/rheumatology/keae570.

Authors

Collaborators

Scleroderma Patient-centered Intervention Network Investigators:
Claire E Adams, Ghassan El-Baalbaki, Kim Fligelstone, Tracy Frech, Daphna Harel, Monique Hinchcliff, Sindhu R Johnson, Maggie Larche, Catarina Leite, Christelle Nguyen, Karen Nielsen, Janet Pope, François Rannou, Tatiana Sofia Rodriguez-Reyna, Anne A Schouffoer, Maria E Suarez-Almazor, Christian Agard, Laurent Alric, Marc André, Floryan Beaslay, Elana J Bernstein, Sabine Berthier, Lyne Bissonnette, Sophie Blaise, Eva Bories, Alessandra Bruns, Carlotta Cacciatore, Patricia Carreira, Marion Casadevall, Benjamin Chaigne, Lorinda Chung, Benjamin Crichi, Thylbert Deltombe, Christopher Denton, Tannvir Desroche, Robyn Domsic, James V Dunne, Bertrand Dunogue, Regina Fare, Dominique Farge-Bancel, Paul R Fortin, Loraine Gauzère, Anne Gerber, Jessica K Gordon, Brigitte Granel-Rey, Aurélien Guffroy, Geneviève Gyger, Eric Hachulla, Sabrina Hoa, Michael Hughes, Alena Ikic, Nader Khalidi, Kimberly S Lakin, Marc Lambert, David Launay, Yvonne C Lee, Paul Legendre, Hélène Maillard, Nancy Maltez, Joanne Manning, Isabelle Marie, Maria Martin Lopez, Thierry Martin, Ariel Masetto, Arsène Mekinian, Sheila Melchor Díaz, Morgane Mourguet, Mandana Nikpour, Louis Olagne, Vincent Poindron, Susanna Proudman, Grégory Pugnet, Loïc Raffray, Alexis Régent, Frederic Renou, Sébastien Rivière, David Robinson, Esther Rodríguez Almazar, Sophie Roux, Perrine Smets, Vincent Sobanski, Robert F Spiera, Virginia Steen, Evelyn Sutton, Carter Thorne, Damien Vagner, John Varga, Pearce Wilcox, Mara Cañedo Ayala, Vanessa Cook, Cassidy Dal Santo, Tiffany Dal Santo, Monica D'onofrio, Sophie Hu, Elsa-Lynn Nassar, Marieke Alexandra Neyer, Sabrina Provencher

Affiliations

¹ Department of Clinical Psychology, Behavioural Science Institute, Radboud University, Nijmegen, the Netherlands.
² Department of IQ Health, Radboud University Medical Center, Nijmegen, the Netherlands.
³ Centre for Mindfulness, Department of Psychiatry, Radboud University Medical Center, Nijmegen, the Netherlands.
⁴ Lady Davis Institute for Medical Research, Jewish General Hospital, Montreal, QC, Canada.
⁵ Department of Medicine, McGill University, Montreal, QC, Canada.
⁶ Research Institute of the McGill University Health Centre, Montreal, QC, Canada.
⁷ National Scleroderma Foundation, Tri-State Chapter, Buffalo, NY, USA.
⁸ National Scleroderma Foundation, Los Angeles, CA, USA.
⁹ Sclérodermie Québec, Longueuil, QC, Canada.
¹⁰ Scleroderma Australia, Melbourne, VIC, Australia.
¹¹ Scleroderma Victoria, Melbourne, VIC, Australia.
¹² Department of Medicine, Division of Rheumatology Johns Hopkins University School of Medicine, Baltimore, MD, USA.
¹³ Department of Psychology, San Diego State University, San Diego, CA, USA.
¹⁴ San Diego Joint Doctoral Program in Clinical Psychology, San Diego State University/University of California, San Diego, CA, USA.
¹⁵ Department of Internal Medicine, University of Texas McGovern School of Medicine, Houston, TX, USA.
¹⁶ Scleroderma Atlantic, Halifax, NS, Canada.
¹⁷ College of Nursing, University of Rhode Island, Kingston, RI, USA.
¹⁸ Scleroderma Society of Ontario, Hamilton, ON, Canada.
¹⁹ Scleroderma Canada, Hamilton, ON, Canada.
²⁰ Service de Médecine Interne, Centre de Référence Maladies Autoimmunes et Autoinflammatoires Systémiques Rares d'Ile de France, de l'Est et de l'Ouest, Hôpital Cochin, Paris, France.
²¹ Assistance Publique Hopitaux de Paris-Centre, Hôpital Cochin, Université Paris Cité, Paris, France.
²² Department of Epidemiology, Biostatistics, and Occupational Health, McGill University, Montreal, QC, Canada.
²³ Respiratory Epidemiology and Clinical Research Unit, McGill University Health Centre, Montreal, QC, Canada.
²⁴ Department of Psychiatry, McGill University, Montreal, QC, Canada.
²⁵ Department of Psychology, McGill University, Montreal, QC, Canada.
²⁶ Biomedical Ethics Unit, McGill University, Montreal, QC, Canada.

PMID: 39447026
PMCID: PMC12048050
DOI: 10.1093/rheumatology/keae570

Abstract

Objectives: The objectives of this study were to compare fatigue in a large multinational SSc cohort with general population data and identify associated sociodemographic, lifestyle and SSc disease factors.

Methods: Scleroderma Patient-centered Intervention Network Cohort participants completed the Patient-Reported Outcomes Measurement Information System-29 v2.0 fatigue domain. T-scores were compared with the USA general population (mean = 50; s.d. = 10). Multivariable linear regression was used to assess associations with sociodemographic, lifestyle, and disease-related variables.

Results: Among the 2385 participants [mean age 54.9 (s.d. = 12.6) years, 87% female, 38% dcSSc], the mean fatigue T-score was 54.6 (s.d. = 11.0); 438 (18%) reported mild fatigue, 641 (27%) moderate fatigue, and 180 (8%) severe fatigue. Fatigue was independently associated with sociodemographic factors age [-0.10 points per year, (95% CI -0.14, -0.07)], male sex [-1.67 points, (-2.96, -0.37)], non-married status [0.97 points (0.04, 1.89)] and country [reference USA; France -2.35 points (-3.48, -1.21) and UK 2.38 points (0.80, 3.97)], and lifestyle factors smoking [4.16 points (2.52, 5.80)], alcohol consumption [-0.18 points per drink per week (-0.28, -0.07)] and BMI [0.34 points per unit (0.27, 0.42)]. Fatigue was associated with disease-related factors, including gastrointestinal involvement [4.21 points (2.99, 5.43)], digital ulcers [1.51 points, (0.25, 2.77)], moderate small joint contractures (1.41 points [0.13, 2.69]), RA [4.34 points (2.37, 6.31)] and SS [1.89 points (0.23, 3.55)]. When pain was included in the model, its association was large [2.19 points (2.03, 2.34)], and interstitial lung disease was also associated [1.21 points (0.42, 2.00)].

Conclusion: In people with SSc, fatigue scores were substantially higher than in the general population and associated with multiple disease factors, including gastrointestinal involvement, several painful disease manifestations, and lung involvement.

Keywords: fatigue; patient-centred care; patient-reported outcome measures; scleroderma; systemic.

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Figures

**Figure 1.**
Fatigue mean T-scores with 95% CIs for the full sample and by country, subtype and sex

**Figure 2.**
Fatigue score classification by country, disease subtype, and sex

See this image and copyright information in PMC

References

1. Swain MG. Fatigue in chronic disease. Clin Sci 2000;99:1–8. - PubMed
1. Basta F, Afeltra A, Margiotta DPE. Fatigue in systemic sclerosis: a systematic review. Clin Exp Rheumatol 2018;36(Suppl 113):150–60. - PubMed
1. Sandqvist G, Scheja A, Hesselstrand R. Pain, fatigue and hand function closely correlated to work ability and employment status in systemic sclerosis. Rheumatology 2010;49:1739–46. - PubMed
1. Murphy SL, Kratz AL, Whibley D, Poole JL, Khanna D. Fatigue and its association with social participation, functioning, and quality of life in systemic sclerosis. Arthritis Care Res 2021;73:415–22. - PMC - PubMed
1. Davies K, Dures E, Ng WF. Fatigue in inflammatory rheumatic disease: current knowledge and areas for future research. Nat Rev Rheumatol 2021;17:651–64. - PubMed

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Fatigue levels and associated factors in systemic sclerosis: a cross-sectional study of 2385 SPIN Cohort participants

Collaborators

Affiliations

Fatigue levels and associated factors in systemic sclerosis: a cross-sectional study of 2385 SPIN Cohort participants

Authors

Collaborators

Affiliations

Abstract

Figures

References

Publication types

MeSH terms

Grants and funding

LinkOut - more resources

Full Text Sources

Medical