To assess the use, satisfaction, needs and preferences regarding physical therapy (PT) in patients with systemic sclerosis (SSc).
Four-hundred-and-five SSc patients, treated in the Leiden University Medical Center multidisciplinary care program and fulfilling ACR/EULAR-2013 SSc-criteria, received a questionnaire containing 37 questions on use and satisfaction regarding PT over a 2-year period, and their needs and preferences for future PT.
Two-hundred-and-four SSc patients (median age: 63years, 81% female) completed the questionnaire. One-hundred-twenty-eight (63%) patients had used or were using PT in primary care setting. For 39% of patients not using PT, lack of referral or lack of knowledge was the reason for not using it. The most frequently reported active treatments were muscle-strengthening (n=92;72%), range of motion (n=77;60%) and aerobic exercises (n=72;56%). Specific SSc hand and mouth-opening exercises were reported by 20 (15%) and 7 (6%) patients, respectively. Manual treatment (massage or passive mobilization) was reported by 83 (65%) patients. Mean satisfaction score (range:0-10) was 8.2 (SD:1.6). Regarding patients' needs, 96 (47%) of the total group wanted to receive more information concerning PT and 128 (63%) to continue/(re)start PT in the near future, with 56/128 (44%) favoring individual treatment on a continuous basis.
We observed a significant variation in the use and content of PT for SSc patients in primary care setting. Our results suggest potential under-use of PT care, in particular for hand and oral dysfunction, and underpin the need for initiatives to improve the quality and accessibility of PT care for SSc patients.