ABSTRACT
To maximize functioning and well-being in people with multiple sclerosis (MS), physiotherapy consultation is recommended at the point of diagnosis and throughout the disease course. We wanted to determine whether patients with MS being managed through a large metropolitan hospital in Australia accessed physiotherapy input as part of their MS management consistent with evidence-based recommendations and to identify patients’ self-reported physiotherapy requirements, including symptom management, information needs, and service delivery preferences.
Surveys were sent to 597 MS clinic patients, and 160 responded. Data were analyzed using descriptive methods to derive frequencies and percentages. The survey consisted of 16 questions plus 2 optional questions related to sociodemographics (age and postcode).
Of 160 respondents, 142 completed all 14 nonoptional questions. One-third of participants (n = 53) were aware of the hospital MS clinic physiotherapy services, with 21.3% (n = 34) saying that they had accessed these services. Conversely, 40.1% of respondents (n = 61) reported having consulted a private physiotherapist. Combined, 52% of respondents reported seeing a physiotherapist. There was a clear preference (94.7%; n = 144) for access to the MS clinic physiotherapy service. The presence of at least 1 current MS-related physiotherapy problem was reported by 82.2 2% of respondents (n = 125). The top ways to access MS-related information were via a specialist MS website (57.6%) and a mobile app (55.6%).
There is an unmet need for physiotherapy, and many participants may have foregone services due to unawareness. Improved awareness and uptake of physiotherapy at the point of diagnosis is needed to maximize functioning and well-being in people with MS.
Multiple sclerosis (MS) is a neurodegenerative disease with a wide range of symptoms. Despite improved efficacy of disease-modifying treatments, they do not provide 100% disease protection, thus early intervention and rehabilitation strategies are fundamental to ensure that individuals with MS achieve the best possible health care outcomes. The MS Brain Health Initiative highlights the importance of people with MS leading “a brain-healthy lifestyle” and recommends aerobic fitness as a key aspect of MS management.1
The benefits of physical activity and its positive health outcomes in MS, including improved physical fitness, muscle strength, mobility, balance, fatigue, depressive symptoms, and quality of life,2-4 are well established, yet individuals with MS engage in less physical activity than individuals without MS,5 likely due to a range of compounding barriers.
Physiotherapy management is an integral service throughout the course of MS to assist with long-term function through specialized early intervention, rehabilitation, and education. Physiotherapy expertise is essential in managing common symptoms of MS (eg, weakness, spasticity, dizziness, incontinence) to maximize functionality and quality of life.6-8 The National Institute for Health and Care Excellence Guidelines for Management of Multiple Sclerosis in Primary and Secondary Care recommend that all people with MS who have mobility problems have access to an assessment by a physiotherapist with expertise in MS to develop individualized goals and a management plan.9 Similarly, the National MS Society in the United States recommends regular and ongoing physiotherapy input for people with MS throughout the course of the disease, starting at the point of diagnosis.10
In Australia, public hospital health care access policy states that patients should receive information about their treatment and care at their first appointment and be informed about other management options, such as physiotherapy services.11 There is a government focus on prevention and early intervention services.12 Thus, it is critical that MS health care providers have routine processes to inform and refer all patients for physiotherapy input.
This health care service audit’s aim is to understand whether individuals with MS (~1000) cared for at a large metropolitan hospital were accessing physiotherapy input as part of their MS management and in line with evidence-based recommendations. Specifically, our objectives were to determine patients’ (1) awareness about the availability of hospital-based MS specialized physiotherapy services; (2) utilization of any physiotherapy services; (3) self-reported symptoms; (4) ideas about the value of exercise and current personal practices; and (5) preferred physiotherapy delivery mode.
METHODS
Participants and Procedures
On June 4, 2020, a survey was sent to 597 individuals with MS who had attended MS clinic appointments in the previous 6 months using the bulk messaging software Vodaphone SMSerTech (TPG Telecom Ltd). The survey was open until July 1, 2020, and a reminder message was sent 1 week before the close of data collection. There were 562 confirmed successful message deliveries. Physiotherapist service awareness, use, and perceived information needs, along with basic demographics, were assessed by 16 specific questions plus a general comments section (TABLE S1, available online at IJMSC.org). Data were collected anonymously using SurveyMonkey (Momentive). Of 562 confirmed message deliveries, the survey was initiated by 28.5% of potential respondents (n = 160), and 88.8% (n = 142) of these participants completed the survey. We report results for all 160 participants, indicating the number of respondents for each question.
Analysis
Responses of “no” and “unsure” were combined for analysis purposes. After data-cleaning procedures, descriptive quantitative analysis, including measures of frequency and percentages, was performed using IBM SPSS Statistics for Windows, version 27.0 (IBM Corp). This project was reviewed and approved by the Monash Health Research Office consistent with clinical audit/quality assurance activities and in accordance with national ethical guidelines.13
RESULTS
Participant Characteristics
Basic demographic and disease data were collected for 142 of the 160 participants who started the survey. Most respondents (83.1%) had been seen at the public hospital MS clinic for more than 6 months. Almost half (48.6%) were younger than 50 years, 38.0% were 50 to 65 years old, and 12.0% were older than 65 years. Two participants (1.4%) did not provide an age range. Of the 126 respondents who answered an optional location question, 84.9% resided in metropolitan locations and 15.1% in rural locations.
Awareness and Utilization of Physiotherapy Services
As identified in Table 1, 33.1% of respondents were aware of MS physiotherapy services at the clinic; 21.3% indicated that they had consulted a physiotherapist at the clinic, and 40.1% reported having accessed a private physiotherapist outside the clinic. In total, 52% of respondents reported having seen a physiotherapist.
Self-Reported Symptoms
The most commonly reported MS symptoms relevant to physiotherapy were fatigue and balance (reported by 66.2% and 60.1%, respectively). Walking difficulty, joint stiffness, bladder problems, spasticity or muscle spasms, pain, and poor exercise tolerance were all commonly reported (TABLE 2). The presence of at least 1 physiotherapy-relevant symptom was reported by 82.2% of respondents (n = 125).
Value of Exercise and Current Personal Practices
When asked about the importance of exercise, 66.9% of respondents considered it either extremely important or very important, and 28.4% considered it somewhat important. Only 4.7% of participants did not consider exercise important. Poor tolerance to either strength or cardio exercise attributed to MS was experienced by 31.1% of respondents. Frequency of exercising was reported to be less than 3 times in the previous week by 45.9% of respondents (TABLE S2). Walking was the most preferred type of exercise (74.3% of participants), followed by home-based exercise (43.9%) and stretching programs (29.1%) (Table S2).
Preferred Physiotherapy Service Delivery Mode
Face-to-face physiotherapy services were preferred by 82.2% of respondents, with only 4.6% preferring telehealth and 13.2% accepting either type of delivery. As identified in FIGURE 1, access to public MS physiotherapy services was preferable for respondents regardless of delivery method.
MS Information Requirements and Preferred Delivery Mode
The respondents most commonly sought information about symptom management (80.6%), referrals and links to allied health services (45.8%), available exercise programs (43.8%), and accessing funding for services (27.8%). Most respondents (69.4%) accessed MS health care information from their health care team during their clinical appointments, and 56.3% used online search engines (Figure 1). More than half of the respondents would be comfortable receiving MS information via an MS specialist website (57.6%) or tablet or smartphone app (55.6%), although 43.1% would like for printed information to be available (Figure 1).
DISCUSSION
The present audit of a large, metropolitan-based MS health care service highlights a need to improve the availability of information and referrals to physiotherapy services for people with MS. Only 52.0% of respondents had consulted a physiotherapist, although 82.2% of respondents reported at least 1 MS symptom that would benefit from physiotherapy input.
Despite evidence-based recommendations for regular and ongoing physiotherapy input for people with MS throughout the course of the disease, the present audit indicates that this does not occur in practice. This is consistent with previous research highlighting unmet needs.14,15 Only 33.1% of the clinic survey respondents were aware of the hospital-based MS physiotherapy service, and only 23.3% of respondents had consulted a physiotherapist within the clinic. More respondents (40.1%) had accessed a private physiotherapist, despite the survey establishing that 94.7% of respondents would prefer public health services access. As the physiotherapy service is responsive and sees patients during their clinic visits, it may be deduced that limited awareness of service availability at the clinic meant that patients consulted external services. With emergence of the Australian National Disability Insurance Scheme, it is also possible that some people are accessing private physiotherapy using this funding.
Guidelines for physical activity in people with mild to moderate MS, developed by the Canadian MS Society, recommend at least 30 minutes of moderate-intensity aerobic activity 2 times per week and strength training exercises for major muscle groups 2 times per week.3 Although most respondents in the present study valued the importance of exercise, 45.9% reported exercising less than 3 to 4 times per week and 37.8% reported exercising 1 to 2 times per week, falling below the recommendations. In addition, the most commonly reported exercise was walking, which is not likely to meet aerobic or strength training recommendations. This is consistent with previous research indicating that people with MS complete less exercise and highlights the need for individualized programs by physiotherapists for safe exercise.16
Although barriers to meeting exercise guidelines are likely to be multifactorial,17 the patient-clinician interaction is crucial in the promotion, creation, and monitoring of individualized programs.18 Previous studies have found a lack of neurologist time, knowledge, resources, information, and recommendations by health care professionals can be barriers to physiotherapy service access for people with MS.14,15,19-21 Due to limited awareness of and access to physiotherapy services, it can be concluded that less promotion and advice was received by patients, impacting knowledge of and compliance with physical activity guidelines.
Richardson and colleagues21 found that an absence of knowledge about available services was also a barrier to exercise promotion. This highlights the need for an improved partnership between the neurology and physiotherapy services within MS clinics to alleviate some of these barriers. In addition, exploration of barriers to accessing physiotherapy services is vital to achieving evidence-informed practice.
Most respondents preferred to receive MS clinic physiotherapy services face-to-face rather than through telehealth; however, this survey was completed in the early months of the COVID-19 pandemic, and telehealth has since become a regular and accepted method of delivering health care.22 The platform does pose challenges in terms of access to technology, computer literacy, clinical observation, and conducting hands-on assessments and treatments.23,24 Research evaluating the clinical effectiveness of physiotherapy consults via telehealth compared with face-to-face consults is still in its infancy, but given the current climate, telehealth is likely to remain a feature of health care provision.
In the public health system, MS management is primarily neurologist led, so awareness of and access to the public physiotherapy service relies heavily on neurologist or nurse practitioner awareness. Most respondents reported that they currently access MS health information through their care team during their appointment. In line with previous findings,14,15,19 this interaction offers an opportunity for improved patient awareness of and access to physiotherapy services. Future work could assess the knowledge, practices, barriers, and facilitators from the perspective of the MS clinic team, including neurologists and nurses, with the aim of identifying strategies to build awareness and explore ways to increase patient physiotherapy access.
Almost half of the respondents wanted access to more information about referrals to allied health services and exercise programs and were comfortable receiving this information via a specialist MS website. With the progression of technology, apps and web resources have the potential to serve as rehabilitation tools to educate, motivate, and monitor a patient’s progress.25
The study has several limitations. Although consideration was given to the design of the survey in terms of clarity and readability, MS can impact cognitive capacity, so it is possible that this impacted some participants completing the survey.
Participants completed this survey during the COVID-19 pandemic, a time when clinic services were primarily via telehealth. To collect an accurate representation of the “usual” clinic service, all study participants had a face-to-face appointment in the preceding months. Although most respondents reported a preference for face-to-face access to physiotherapy services, this needs to be interpreted with caution given that the shift to telehealth delivery because of pandemic restrictions is likely to have improved the acceptability of this option.
Finally, this health services audit collected very limited patient information, such as sociodemographics, MS treatment, and level of disability; therefore, little is known about the overall representation of this cohort and the impact this could have had.
CONCLUSIONS
Physiotherapy input and rehabilitation is proven to improve muscle strength, exercise abilities, fatigue, and movement in people with MS, yet this study shows that physiotherapy services do not reach all those in need. Raising the awareness and profile of physiotherapy, and therefore its availability to people with MS, is vital to achieve the best health outcomes. Multidisciplinary health care that includes the physiotherapist as a collaborative partner, alongside MS neurologists and nurse specialists, is important to ensure that all patients receive physiotherapy consultation from the point of diagnosis and throughout the course of the disease.
To offer care in line with best practice recommendations, all neurologists should refer patients with multiple sclerosis to a physiotherapy service at the point of diagnosis.
Exploration of barriers to accessing physiotherapy services is vital.
Hospital-based physiotherapy service was the preferred access option for individuals with multiple sclerosis, but service awareness is a barrier to access.
Opportunities to improve access to physiotherapy services include providing information and education resources in various forms (websites, apps, printed resources) and via various methods (telehealth, in-person) to key stakeholders and consumers.
ACKNOWLEDGMENTS:
We thank the participants, who gave us their time and personal information for this research.
REFERENCES
FINANCIAL DISCLOSURES: The authors declare no conflicts of interest.
FUNDING/SUPPORT: None.
Author notes
Note: Supplementary material for this article is available online at IJMSC.org.