Physical Therapy Rarely Focuses on Hand, Mouth Problems, Study Finds
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Nearly two-thirds of people with scleroderma undergo physical therapy — often called PT — and are generally satisfied with their care. But nearly half of all patients need more information on such treatment, according to the results of a questionnaire conducted in the Netherlands.
Individual therapy, provided by a physical therapist close to the patients’ homes and familiar with scleroderma, was preferred, according to the respondents, who noted that physical therapy care varied in type and duration.
But notably, the respondents said common hand and mouth problems were rarely addressed in PT. Those results suggest that more attention needs to be given to hand and oral symptoms in physical therapy — and to identifying effective treatment approaches for such problems, according to the researchers.
These findings, the researchers said, may help to optimize accessibility and quality of primary care physical therapy in people living with scleroderma.
The study, “Physical therapy in systemic sclerosis: the patient perspective,” was published in the journal Arthritis Care & Research.
Scleroderma, also known as systemic sclerosis (SSc), is a highly variable autoimmune disease that can affect several organs and tissues, leading to a wide range of symptoms such as joint pain, skin thickening, gastrointestinal and respiratory problems, and fatigue.
Physical therapy is “generally considered an integral part of the management of SSc,” the researchers wrote. It can help alleviate pain, improve posture and mobility, prevent muscle strength loss, and improve heart, lung, and gastrointestinal function.
While previous studies have highlighted unmet needs regarding physical therapy in this patient population, improving this area “remains challenging due to a lack of insight into current PT use, and a lack of studies on the effectiveness and safety of PT in SSc,” the researchers wrote. They noted that only a single study assessed the content of PT sessions as reported by physicians.
Now, a team in the Netherlands set out to evaluate the use and content of physical therapy among 405 adults with scleroderma seen at a single care center. Through a questionnaire, patients also were asked about their satisfaction with their PT program and their future needs and preferences.
All of the participants were treated through the Leiden University Medical Center multidisciplinary care program. This study was part of a larger project at the center that also is analyzing the perspectives of physical therapists.
The patient questionnaire, which covered the two previous years, contained 37 questions and addressed five physical therapy themes: use, content, perceived benefits, satisfaction, and needs and preferences. For perspective, the participants’ sociodemographic data, disease characteristics, and measurements of daily functioning also were analyzed.
A total of 204 patients (50.4%) completed the questionnaire. Their median age was 63, most (81%) were women, and 68% had limited cutaneous scleroderma. Limited scleroderma is both milder and more common than diffuse scleroderma, the other main type, and usually will develop at a slower pace.
According to the researchers, the responders were significantly older than those who did not return the questionnaire (63 vs. 56 years), but there were no other major differences between the two groups.
The survey results showed that 128 patients (63%) had used or were undergoing physical therapy in a primary care setting in the previous two years. A total of 79 (63%) were using it at the time of the questionnaire.
The team noted that these frequencies were higher than those reported in previous studies, which may be related to this patient population’s older age. Different reimbursement policies between the countries also may have had an impact on these numbers.
Those using physical therapy were generally very satisfied, giving a mean score of 8.2 out of 10. The main reasons for not having used PT were reported as: lack of need, cited by 55%, not having a referral, as reported by 21%, and being unaware of the possibility of such therapy (17%).
Notably, patients who used physical therapy were significantly older relative to those who did not use this type of care, and showed greater physical disabilities. They also were more often positive for damaging disease-associated antibodies.
In addition, most patients reported that physical therapy sessions had a maximum duration of 30 minutes (94%) and occurred at the location of the physical therapist practice (92%). About half received it most frequently less than once per week and for more than one year.
Most (84%) of those who had used or were using PT underwent one or more active intervention modalities, or therapy pathways, with the most frequent being muscle strengthening exercises (72%), followed by range of motion exercises (60%), and aerobic exercises (56%). Nearly two-thirds received manual treatment, meaning massage or passive mobilization.
Physical therapy rarely included scleroderma-specific exercises, such as those to improve hand mobility and mouth opening. Hand exercises were reported by 16% of patients, while mouth-opening exercises were reported by 6%.
Given that 80% of scleroderma patients have hand dysfunction and up to 40% experience oral problems, these findings highlight an unmet need within physical therapy to target disease-specific difficulties, the scientists suggested.
“We can only speculate why these exercises are not frequently addressed. Probably, limited mouth and hand function and the effectiveness of exercises to improve hand function and mouth opening need more attention in the education of physical therapists and patients,” they wrote.
This research team is seeking to address some of these issues in an upcoming 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,” the team noted.
Regarding the perspectives and needs of all respondents, most patients (85%) questioned in this study agreed that specific knowledge on scleroderma and/or rheumatic diseases is necessary for physical therapists to treat scleroderma patients.
Nearly two-thirds (63%) wanted to continue or restart physical therapy in the near future, with 57% favoring treatment close to home and 44% preferring individual, continuous treatment. Nearly half (47%) were interested in receiving more information concerning such therapy.
These findings suggest a “significant variation in the use and content of PT for SSc patients in primary care setting,” and a “potential under-use of PT care, in particular for hand and oral dysfunction,” the researchers wrote.
The data also “underpin the need for initiatives to improve the quality and accessibility of PT care for SSc patients,” the team concluded.
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