Physical Therapy in Systemic Sclerosis: The Patient Perspective

Arthritis Care & Research, vol. 75, pp. 145–151

Abstract

OBJECTIVE: To assess the use, satisfaction, needs, and preferences regarding physical therapy (PT) in patients with systemic sclerosis (SSc). METHODS: A total of 405 SSc patients, treated in the Leiden University Medical Center multidisciplinary care program and fulfilling American College of Rheumatology (ACR)/European Alliance of Associations for Rheumatology (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. RESULTS: A total of 204 SSc patients (median age 63 years, 81% female) completed the questionnaire. One hundred twenty-eight patients (63%) had used or were using PT in a 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 patients (65%). The mean ± SD satisfaction score (range 0-10) was 8.2 ± 1.6. Regarding patients' needs, 96 patients (47%) of the total group wanted to receive more information concerning PT, and 128 (63%) wanted to continue, start, or restart PT in the near future, with 56 of the 128 patients (44%) favoring individual treatment on a continuous basis. CONCLUSION: We observed a significant variation in the use and content of PT for SSc patients in a primary care setting. Our results suggest potential underuse 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.

Authors 10

1. Sophie I E Liem corresponding Aachen

   Leiden University Medical Center

   Affiliation as printed

   Leiden University Medical Center Leiden The Netherlands

   Leiden University Medical Center Leiden The Netherlands

2. Nina Marijn van Leeuwen Aachen Department of Rheumatology, Leiden University Medical Center

   Leiden University Medical Center

   Affiliation as printed

   Leiden University Medical Center Leiden The Netherlands

   Department of Rheumatology, Leiden University Medical Center, THE NETHERLANDS

3. T. P. M. Vliet Vlieland Aachen Department of Orthopedics

   Leiden University Medical Center

   Affiliation as printed

   Leiden University Medical Center Leiden The Netherlands

   Department of Orthopedics, Rehabilitation Medicine and Physical Therapy Leiden University Medical Center The Netherlands

4. Gerrie M. W. Boerrigter Aachen Department of Physical Therapy Leiden University Medical Center The Netherlands

   Leiden University Medical Center

   Affiliation as printed

   Leiden University Medical Center Leiden The Netherlands

   Department of Physical Therapy Leiden University Medical Center The Netherlands

5. Cornelia H. M. van den Ende

   Radboud University Nijmegen · Radboud University Medical Center · Sint Maartenskliniek

   Affiliation as printed

   Sint Maartenskliniek, Nijmegen and Radboud University Medical Center Nijmegen The Netherlands

   Sint Maartenskliniek, Nijmegen and Radboud University Medical Center Nijmegen The Netherlands

6. Lian A. J. de Pundert

   Haga Hospital

   Affiliation as printed

   HagaZiekenhuis The Netherlands

   Department of Physical Therapy HagaZiekenhuis The Netherlands

7. Rita Schriemer

   Radboud University Nijmegen · Radboud University Medical Center

   Affiliation as printed

   Radboud University Medical Center, Nijmegen, The Netherlands, and NVLE, Dutch Patient Organization for Systemic Autoimmune Diseases Utrecht The Netherlands

   Radboud University Medical Center, Nijmegen, The Netherlands, and NVLE, Dutch Patient Organization for Systemic Autoimmune Diseases Utrecht The Netherlands

8. Julia Spierings

   University Medical Center Utrecht

   Affiliation as printed

   University Medical Center Utrecht The Netherlands

   Department of Rheumatology and Clinical Immunology, University Medical Center, Utrecht, The Netherlands

9. Madelon C Vonk

   Radboud University Medical Center

   Affiliation as printed

   Radboud University Medical Center Nijmegen The Netherlands

   Radboud University Medical Center Nijmegen The Netherlands

10. Jeska Kirsten De Vries-Bouwstra Aachen Department of Rheumatology, Leiden University Medical Center

    Leiden University Medical Center

    Affiliation as printed

    Leiden University Medical Center Leiden The Netherlands

    Department of Rheumatology, Leiden University Medical Center, THE NETHERLANDS