TY - JOUR
T1 - Physical therapy in systemic sclerosis
T2 - the patient perspective
AU - Liem, Sophie I E
AU - van Leeuwen, Nina M
AU - Vliet Vlieland, Thea P M
AU - Boerrigter, Gerrie M W
AU - van den Ende, Cornelia H M
AU - de Pundert, Lian A J
AU - Schriemer, Marisca R
AU - Spierings, Julia
AU - Vonk, Madelon C
AU - de Vries-Bouwstra, Jeska K
N1 - Funding Information:
Supported by the Arthritis Research and Collaboration Hub (ARCH) Foundation and Stichting NVLE fonds. Dr. Liem's work was supported by a KNAW van Walree grant to attend the 6th World Congress Systemic Sclerosis, July 12–14, 2020.
Funding Information:
A considerable proportion of patients reported a lack of information and a need for future delivery of PT. Patients in this study indicated a preference for individual therapy provided by a physical therapist close to their home, preferably by a physical therapist familiar with SSc. In an ideal situation, probably all patients want their providers to be familiar with the patient's disorder. It is, therefore, important to know if treating health care professionals are sufficiently familiar with SSc. Our research group aims to solve the aforementioned problems related to quality and accessibility of PT services in primary care by conducting a project focusing on improvement of education of primary care physical therapists in SSc and development of guidelines for communication between physical therapists and the rheumatologists and non‐physician health professionals in the hospital. This project has been awarded with a research grant (ZonMw: 10390092012220).
Funding Information:
The authors acknowledge the Dutch Arthritis Foundation (ReumaNederland) for funding the ARCH initiative and supporting this work, and the NVLE (Stichting NVLE fonds) for additional funding. Secondly, the authors thank Rory Monahan for her diligent proofreading of this manuscript.
Publisher Copyright:
© 2021 The Authors. Arthritis Care & Research published by Wiley Periodicals LLC on behalf of American College of Rheumatology.
PY - 2023/1
Y1 - 2023/1
N2 - 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.
AB - 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.
UR - http://www.scopus.com/inward/record.url?scp=85136729301&partnerID=8YFLogxK
U2 - 10.1002/acr.24741
DO - 10.1002/acr.24741
M3 - Article
C2 - 34219404
SN - 2151-464X
VL - 75
SP - 145
EP - 151
JO - Arthritis care and research
JF - Arthritis care and research
IS - 1
ER -