Exercise habits and factors associated with exercise in systemic sclerosis: a Scleroderma Patient-centered Intervention Network (SPIN) cohort study

Abstract

Objective: Exercise is associated with improved health in many medical conditions. Little is known about the exercise habits of people with systemic sclerosis (SSc, or scleroderma). This study assessed the proportion of individuals with SSc who exercise and associations of demographic and disease variables with exercise. Additionally, the weekly amount of time spent exercising and the types of exercise performed were assessed among patients exercising.

Methods: The sample consisted of adult participants with SSc enrolled in the Scleroderma Patient-centered Intervention Network (SPIN) Cohort who completed baseline questionnaires from March 2014 through August 2015. Baseline questionnaires included questions on exercise habits, physician-reported medical characteristics, self-report demographic characteristics, the Health Assessment Questionnaire-Disability Index, Patient Health Questionnaire-9, and Patient-Reported Outcomes Measurement Information System-29.

Results: Of 752 patients, 389 (51.7%) reported presently engaging in exercise, and these patients exercised on average 4.7 h [standard deviation (SD) = 2.8] per week. Among patients who reported exercising, walking was most commonly reported (n = 295, 75.8%). In bivariate analyses, present exercise was associated with more education, lower body mass index, some (versus no) alcohol consumption, non-smoking, limited/sine disease subtype, absence of skin thickening, lower disability, higher physical function, lower symptoms of anxiety and depression, less fatigue, lower sleep disturbance, higher ability to participate in social roles and activities, and less pain.

Conclusions: Approximately half of SSc patients reported that they are currently exercising with walking being the most common form of exercise. Understanding exercise patterns and factors associated with exercise will help better inform intervention programs to support exercise for patients with SSc.

Implications for rehabilitation

• Systemic sclerosis is a rare autoimmune rheumatic disease associated with great morbidity and highly diverse presentation.

• Approximately half of people with both limited and diffuse systemic sclerosis report exercising.

• Most exercisers walk, but patients engage in a wide variety of exercise-related activities.

• Individually designed exercise programs are most likely to support and encourage exercise in patients with diverse disease manifestations.

Keywords:

• Scleroderma
• systemic sclerosis
• exercise
• exercise habits
• SPIN

Acknowledgements

SPIN Investigators: Murray Baron, McGill University, Montréal, Québec, Canada; Dan Furst, University of California, Los Angeles, CA, USA; Karen Gottesman, Scleroderma Foundation, Los Angeles, CA, USA; Frank van den Hoogen, Radboud University Medical Center and Sint Maartenskliniek, Nijmegen, the Netherlands; Vanessa Malcarne, San Diego State University, San Diego, CA, USA; Maureen D. Mayes, University of Texas McGovern School of Medicine, Houston, TX, USA; Warren R. Nielson, St. Joseph’s Health Care, London, Ontario, Canada; Robert Riggs, Scleroderma Foundation, Danvers, MA, USA; Maureen Sauve, Scleroderma Society of Ontario, Hamilton, Ontario; Fredrick Wigley, Johns Hopkins University School of Medicine, Baltimore, MD, USA; Shervin Assassi, University of Texas McGovern School of Medicine, Houston, TX, USA; Isabelle Boutron, Université Paris Descartes, and Assistance Publique-Hôpitaux de Paris, Paris, France; Angela Costa Maia, University of Minho, Braga, Portugal; Ghassan El-Baalbaki, Université du Québec à Montréal, Montréal, Québec, Canada; Carolyn Ells, McGill University, Montréal, Québec, Canada; Kim Fligelstone, Scleroderma Society, London, UK; Catherine Fortune, Scleroderma Society of Ontario, Hamilton, Ontario, Canada; Tracy Frech, University of Utah, Salt Lake City, UT, USA; Dominique Godard, Association des Sclérodermiques de France, Sorel-Moussel, France; Daphna Harel, New York University, New York, NY, USA; Ann Impens, Midwestern University, Downers Grove, IL, USA; Yeona Jang, McGill University, Montréal, Québec, Canada; Ann Tyrell Kennedy, Federation of European Scleroderma Associations, Dublin, Ireland; Maggie Larche, McMaster University, Hamilton, Ontario, Canada; Catarina Leite, University of Minho, Braga, Portugal; Carlo Marra, Memorial University, St. John’s, Newfoundland, Canada; Karen Nielsen, Scleroderma Society of Ontario, Hamilton, Ontario, Canada; Janet L. Poole, University of New Mexico, Albuquerque, New Mexico, USA; Janet Pope, University of Western Ontario, London, Ontario, Canada; Alexandra Portales, Asociación Española de Esclerodermia, Madrid, Spain; Russell J. Steele, Jewish General Hospital and McGill University, Montréal, Québec, Canada; Maria E. Suarez-Almazor, University of Texas MD Anderson Cancer Center, Houston, TX, USA; Durhane Wong-Rieger, Canadian Organization for Rare Disorders, Toronto, Ontario, Canada; Alexandra Albert, Université Laval, Québec, Québec, Canada; Guylaine Arsenault, Sherbrooke University, Sherbrooke, Québec, Canada; Lyne Bissonnette, Sherbrooke University, Sherbrooke, Québec, Canada; Gilles Boire, Sherbrooke University, Sherbrooke, Québec, Canada; Alessandra Bruns, Sherbrooke University, Sherbrooke, Québec, Canada; Patricia Carreira, Servicio de Reumatologia del Hospital 12 de Octubre, Madrid, Spain; Lorinda Chung, Stanford University, Stanford, CA, USA; Pierre Dagenais, Sherbrooke University, Sherbrooke, Québec, Canada; Christopher Denton, Royal Free London Hospital, London, UK; Robyn Domsic, University of Pittsburgh, Pittsburgh, PA, USA; James V. Dunne, St. Paul’s Hospital and University of British Columbia, Vancouver, British Columbia, Canada; Paul Fortin, Université Laval, Québec, Québec, Canada; Anna Gill, Royal Free London Hospital, London, UK; Jessica Gordon, Hospital for Special Surgery, New York City, NY, USA; Genevieve Gyger, Jewish General Hospital and McGill University, Montréal, Québec, Canada; Ariane L Herrick, University of Manchester, Salford Royal NHS Foundation Trust, Manchester, UK; Monique Hinchcliff, Northwestern University, Chicago, Illinois, USA; Alena Ikic, Université Laval, Québec, Québec, Canada; Niall Jones, University of Alberta, Edmonton, Alberta, Canada; Artur Jose de B. Fernandes, Sherbrooke University, Sherbrooke, Québec, Canada; Suzanne Kafaja, University of California, Los Angeles, California, USA; Nader Khalidi, McMaster University, Hamilton, Ontario, Canada; Benjamin Korman, Northwestern University, Chicago, IL, USA; Patrick Liang, Sherbrooke University, Sherbrooke, Québec, Canada; Joanne Manning, Salford Royal NHS Foundation Trust, Salford, UK; Ariel Masetto, Sherbrooke University, Sherbrooke, Québec, Canada; David Robinson, University of Manitoba, Winnipeg, Manitoba, Canada; Sophie Roux, Sherbrooke University, Sherbrooke, Québec, Canada; Doug Smith, University of Ottawa, Ottawa, Ontario, Canada; Robert Spiera, Hospital for Special Surgery, New York, NY, USA; Virginia Steen, Georgetown University, Washington, DC, USA; Evelyn Sutton, Dalhousie University, Halifax, Nova Scotia, Canada; Carter Thorne, Southlake Regional Health Centre, Newmarket, Ontario, Canada; John Varga, Northwestern University, Chicago, IL, USA; Pearce Wilcox, St. Paul’s Hospital and University of British Columbia, Vancouver, British Columbia, Canada; Vanessa C. Delisle, Jewish General Hospital and McGill University, Montréal, Québec, Canada; Claire Fedoruk, Jewish General Hospital, Montréal, Québec, Canada; Rina S. Fox, San Diego State University and University of California, San Diego, San Diego, CA, USA; Shadi Gholizadeh, San Diego State University and University of California, San Diego, San Diego, CA, USA; Lisa R. Jewett, Jewish General Hospital and McGill University, Montréal, Québec, Canada; Brooke Levis, Jewish General Hospital and McGill University, Montréal, Québec, Canada; Sarah D. Mills, San Diego State University and University of California, San Diego, San Diego, CA, USA; Mia R. Pepin, Jewish General Hospital, Montréal, Québec, Canada; Jennifer Persmann, Université du Québec à Montréal, Montréal, Québec, Canada.

Disclosure statement

SPIN was funded by a Canadian Institutes of Health Research (CIHR) Emerging Team Grant for Rare Diseases (TR3–119192 to B.D.T.). In addition to CIHR funding, SPIN has received institutional contributions from the Lady Davis Institute for Medical Research of the Jewish General Hospital, Montréal, Canada and from McGill University, Montréal, Canada. SPIN has also received support from the Scleroderma Society of Ontario, the Scleroderma Society of Canada, and Sclérodermie Québec. Individual authors are supported by the following funding agencies: CIHR Master’s Award (to M.A.); Fonds de Recherche Santé Doctoral Training Award (to D.B.R.); CIHR Banting Postdoctoral Fellowship (to L.K.); CIHR Clinician Scientist Award, Oscar and Eleanor Markovitz Fund for Scleroderma Research (to S.R.J.) and Arthritis Society Investigator Award (to B.D.T.).

No potential conflict of interest was reported by the authors.

Additional information

Funding

SPIN was funded by a Canadian Institutes of Health Research (CIHR) Emerging Team Grant for Rare Diseases (TR3–119192 to B.D.T.).