Fatigue, Raynaud’s top physical activity barriers for patients with scleroderma
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Fatigue and Raynaud’s syndrome were rated “important” or “very important” as barriers to physical activity in at least 50% of patients with systemic sclerosis, according to survey results published in Arthritis Care & Research.
“Being physically active is important for everybody, but it is difficult for people with scleroderma who face major barriers because of their disease,” Sami Harb, BSc, of McGill University and the Sir Mortimer B. Davis Jewish General Hospital, in Montreal, Canada, told Healio Rheumatology. “Our study identified important challenges to being active faced by people with scleroderma as well as solutions that some of them have found to be helpful. Results from our study will inform a program to support physical activity that we are developing for people with scleroderma.”
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To examine the prevalence and significance of barriers, as well as the likelihood of using possible facilitators, to physical activity among patients with SSc, Harb and colleagues surveyed participants enrolled in the international Scleroderma Patient-Centered Intervention Network (SPIN) cohort. The researchers in July 2019 invited via email a total of 1,707 eligible participants who met the 2013 ACR/EULAR criteria for SSc, were at least 18 years of age, spoke English, French or Spanish fluently, and able to respond to questions over the internet.
To promote participation, invitees were informed that one randomly selected respondent would win a trip to the 2020 SSc World Congress in Prague. The survey was closed in October 2019, with 721 respondents having completed the survey. Questions asked participants to rate the importance of 20 possible barriers, including 14 medical barriers, four related to social or personal issues, and one environmental factor. The survey also gauged respondents’ likelihood of using 91 corresponding barrier‐specific facilitators and 12 general facilitators.
According to the researchers, at least 25% of respondents experienced 13 barriers, with fatigue and Raynaud’s syndrome rated “important” or “very important” by at least 50%. Seven barriers — joint stiffness and contractures, shortness of breath, gastrointestinal problems, difficulty grasping, pain, muscle weakness and mobility limitations, and low motivation — were rated “important” or “very important” by 26% to 50% of participants.
Regarding facilitators, 23 out of the possible 103 were rated “likely” or “very likely” to be used by at least 75% of participants who experienced corresponding barriers. These facilitators focused on adapting exercises — such as controlled or slow movement, taking care of one’s body — with stretching used as one example — keeping warm and protecting the skin. At least 50% of participants who tried a facilitator rated that facilitator as “likely” or “very likely” to use. However, among those with a barrier who had not tried the corresponding facilitator, only 12 of the 103 were rated by more than 50% as “likely” or “very likely.”
“Symptoms of the disease posed important challenges, particularly those related to Raynaud’s phenomenon and fatigue,” Harb said. “Study participants identified creative solutions that can be used by other people with scleroderma, including things like putting warmers into their gloves to keep their hands warms and planning exercise for the time of day when they have the most energy. Health care providers can use our findings to help people with scleroderma to be physically active despite challenges they face due to their disease.”
Perspective
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The incapacitating complications of systemic sclerosis have the potential to affect a patients’ quality of life in numerous ways. Most patients with SSc struggle with Raynaud’s phenomenon, joint pain and contractures, skin thickening, interstitial lung disease, pulmonary arterial hypertension and gastrointestinal difficulties.
Although the complications associated with SSc often impair the quality of patients’ lives, physical activity can be a positive intervention for patients that struggle with this disease. As health care providers, it is imperative to identify those barriers to physical inactivity and promote facilitators or strategies to help patients be successful in their chronic disease journey to provide a better quality of life.
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