Physical activity in people with multiple sclerosis and the impact of the COVID-19 pandemic

Summary

Introduction: Multiple sclerosis (MS) is a chronic autoimmune neurodegenerative disease. In which, in addition to pharmacotherapy, regimen measures play an integral role in complex therapy, including physical activity. Many clinical studies have demonstrated the positive effect of regular physical activity on on the symptoms of the disease, yet people with the disease seem to be insufficiently physically active. Therefore, the aim of our study was to evaluate the level of and type of physical activity that people with MS in the Czech Republic engage in, and how their exercise regimen was affected by the impact of the coronavirus pandemic. Methodology: The study was realized in the form of an international questionnaire survey. Only results from Czech patients are presented in this paper. Results: A total of 265 people with MS (55 men) participated in the study, from newly diagnosed to chronic stage patients (with disease duration of more than 20 years). The majority of respondents (more than 80%) engaged in some form of exercise, with walking, health exercises or cycling being the most common activities. However, only 64% were meeting the recommended amount of exercise according to the guidelines. The use of modern technology in exercise activities also increased significantly during the pandemic. Conclusion: Information on patients’ usual exercise regimens can help neurologists and rehabilitation professionals to better plan exercise and physical activities for this group of patients.

Keywords:

telerehabilitation – Physical activity – Multiple sclerosis – exercise – COVID-19

This is an unauthorised machine translation into English made using the DeepL Translate Pro translator. The editors do not guarantee that the content of the article corresponds fully to the original language version.

 

Introduction

Regular physical activity is nowadays considered an important modifying factor in the course of many chronic diseases, including neurodegenerative diseases such as MS. In neurodegenerative diseases, the concept of brain health is even promoted, i.e. a set of recommended regimen measures for patients to maintain good functional status of nerve cells in the CNS [1]. Specifically, a large number of studies are available on the topic of health benefits of various exercise and physical activities in people with MS [2]. Exercise is considered to be safe and expert-adjusted exercise loads have not been shown to increase the risk of disease relapse [3,4]. There are also clear recommendations on physical activity for people with varying degrees of neurological impairment [5,6]. Similar to the WHO recommendations for the general population, it is recommended that people with MS should engage in at least 150 min per week of exercise (i.e., structured, controlled activity) or physical activity as part of their lifestyle (walking is an example of an activity) [5]. For people with more severe disability, exercise and rehabilitation interventions can then help to alleviate the symptoms of the disease [7]. However, there is information from international studies that a large number of people with MS do not engage in physical activity at all or not enough to expect health benefits [8]. Therefore, in order to plan rehabilitation interventions more effectively and to influence patients' motivation and thus adherence to an active lifestyle, our aim is to know what activities people with MS prefer and practice. This article describes the results of a questionnaire survey on the impact of the COVID-19 pandemic on physical activity in Czech MS patients, which were obtained in the context of a large international study.

 

Methodology

Creation and dissemination of the questionnaire

The questionnaire investigating the physical activities performed by people with MS and the impact of these activities on the health of the individual during the COVID-19 pandemic was conducted as part of the international study of the professional society RIMS (Rehabilitation In Multiple Sclerosis). The actual questionnaire was developed by consensus of an international panel of experts (rehabilitation physician, physiotherapists, psychologist and sports kinesiologist). The aim of the questionnaire was to obtain information on subjectively rated physical activity (type of activity, duration, intensity, etc.) before and after the COVID-19 pandemic outbreak. The questionnaire consisted of a total of 74 questions (with a majority of closed questions) and took the respondents approximately 30 min to complete. Each participating country received approval from the local ethics committee to conduct the survey. Before completing the questionnaire, respondents confirmed their consent to the storage and processing of their anonymised data. Personal information such as patient age was only recorded within categories to maximise anonymisation of the data. As the survey was conducted during the COVID-19 pandemic (May to July 2021), the questionnaires were completed online.

 

Data analysis

For statistical processing, the data were categorised according to the level of disability. Respondents reported their subjectively rated disability level (patient determined disease steps; PDDS) in the questionnaire, which was converted to the corresponding Expanded Disability Status Scale (EDSS) according to Kobelt [9] so that this corresponded to the classification according to the recommendations [5] into those with mild disability (PDDS 0-3), moderate disability (PDDS 4-6) and severe disability (PDDS 7-8). Subsequently, the level of physical activity in the period before and during the COVID-19 pandemic (characterised by activity type, frequency, duration and difficulty) was assessed for the whole population and for these individual grades. To assess whether they met physical activity recommendations, a cut-off value of 150 min of all types of physical activity per week was used [5]. SPSS 22 software (IBM, Armonk, NY, USA) was used for statistical evaluation of data from Czech respondents. McNamara test and chi-square test were used to compare categorical responses.

 

Results

Respondents

A total of 3 810 MS patients from 11 countries participated in the international study. From the Czech Republic, data from a total of 265 people with MS (55 of them men) were evaluated. The majority of respondents from the Czech Republic were in the age group 35-44 years (33%) and 45-54 years (31%). Both newly diagnosed patients (within 1 year of MS diagnosis) and those diagnosed with MS more than 20 years ago were represented. The largest group was those diagnosed 5-15 years ago (47%). Detailed demographic and clinical characteristics of the cohort are shown in Table 1. The majority of respondents reported that they did not need or use assistance with exercise and mobility activities (56%). If they reported any support with exercise, it was most often a close relative (partner, child) (29%), another family member (6%) or friends (7%).

Movement activity before the pandemic

Most respondents reported engaging in some form of exercise or physical activity in the pre-pandemic period (87.9%, n = 224). Overall, walking was the most commonly practiced physical activity (22.3%). Of the exercise activities, respondents were most likely to engage in some form of health-related exercise at home (10.9%), followed by yoga (9%), fitness exercises at the gym (8.7%), and weight training (6%) (Table 2). In patients with mild disability (PDDS 0-3), walking was the most popular activity, followed by cycling, yoga and running, as in the overall assessment. Those with moderate disability (PDDS 4-6), who already have impaired walking ability and use compensatory aids, before the pandemic, most commonly engaged in some form of health-related exercise in the home environment, followed by walking and exercise in rehabilitation centres under the guidance of a physiotherapist. In the group with the most severe neurological impairment (PDDS 7-8), the most common activity was health-related exercise as instructed by a physiotherapist in the home environment, followed by exercise under the direct guidance of a physiotherapist, and the next most common activity was modified cycling (in the case of these patients, the most common activity was assisted pedalling on a motomed). Detailed characteristics of the exercise activities performed are shown in Tables 2 and 3. In total, 164 probands (64%) met the recommended amount of physical activity/exercise according to current recommended practices (i.e., at least 150 min of exercise activity per week).

 

Movement activity during the COVID-19 pandemic

Overall, fewer respondents engaged in physical activity and exercise during the pandemic (80.5%, n = 206). The number of patients meeting the recommended amount of physical activity also decreased statistically significantly during the pandemic (p < 0.001). The number of respondents who reported walking as their main physical activity increased (30.2%). The number of patients who engaged in health-related exercise at home also increased (16.2%). However, we can conclude that the most frequently performed activities by persons with MS with varying degrees of disability were very similar to those performed before the pandemic (Table 3).

 

Use of modern technologies in physical activities

During the COVID-19 pandemic, the use of modern technology for physical activity increased significantly (p < 0.001). Before the pandemic, 49% of respondents reported using technology, with the most frequent use by those with mild disability (57%), followed by those with moderate disability (38%) and the least by those with severe disability (5%). During the pandemic, 60% of respondents reported using modern technology to support movement, again with the most frequent use by those with mild disability. In both the pre-pandemic and pandemic periods, wearable devices (e.g. Fitbit smartwatches, pedometers, etc.) were the most common. People with mild disabilities used these devices most often when walking or running. In contrast, those with moderate and higher disability were more likely to use a phone or tablet to watch exercise videos (see Table 4 for details).

The most frequently cited motivations for using technology were the ability to choose when to exercise/perform their activities (33.9%), not having to travel to the gym/sports field (21.5%), and an overall reduction in exercise time (13.9%). On the other hand, the lack of personal (21.8%) and social contact (20%) and the difficulty of adapting the home environment (10.9%) were perceived as barriers to their use.

 

Discussion

Our study provides new insights into the most commonly performed physical activities in Czech MS patients. Although many clinical studies have shown that regular exercise helps to positively influence MS symptoms [2,7], it seems that a significant number of patients are still insufficiently active. Foreign studies report that according to objective measurements (using accelerometer) only 20% of MS patients move daily with moderate intensity exercise for at least half an hour [10]. In contrast to persons of the normal healthy population, the level of physical activity of persons with MS is not dependent on age and gender, but rather on the degree of neurological disability and symptoms of the disease [11]. From a psychological perspective, participation in physical activity is influenced not only by the degree of neurological disability, but also by self-confidence in one's own abilities (self-efficacy) and related subjectively perceived barriers to physical activity [12]. Patients reported fatigue, physical limitations and lack of time as the most common barriers [13].

According to the results of the presented questionnaire survey, more than 60% of the participating respondents engage in physical activity as recommended, which is also consistent with the results of a published study conducted by the Rehabilitation of Individuals with MS International (RIMS) [14]. However, this seemingly very positive result is certainly distorted to some extent by the fact that the questionnaire on exercise and physical activity was filled in by patients who are active (just by filling in the present questionnaire). Overall, walking was the most frequently practiced activity reported by respondents. It has been reported in the literature that MS patients walk an average of 5-6,000 steps per day [15]. Persons with minimal disability (EDSS 0-1.5) can walk the generally recommended 10,000 steps without difficulty. However, as the Kurtzke EDSS scale value increases, the average number of steps decreases to an average of 6,000 steps for EDSS 4.0, to approximately 3,000 steps for persons with EDSS 6.0 [16]. Unfortunately, only a smaller percentage of walking during the day is continuous and at a moderate intensity of exertion to be considered a physical activity with health benefits [17]. Thus, this fact should be kept in mind when discussing appropriate exercise regimens for MS patients. In general, aerobic activity at an intensity of 60-70% of maximum heart rate for 30 min 2-3 times a week (which may be just continuous walking) is recommended for people with MS, ideally supplemented by strength training (also 2-3 times a week, 1-3 sets of 5-10 exercises of 8-15 repetitions), stretching (especially of the lower limb muscles) and some form of coordination exercise [5]. However, these general recommendations are always individually modified according to the patient's fitness level, his/her overall neurological disability and prevailing symptoms, as well as his/her current exercise capacity.

If we look more closely at the groups of patients with different levels of disability, those with pre-existing limitations in walking are dominated by health exercises (most often those learned in rehabilitation care). Similar results were also obtained in a Canadian study that looked at the type of preferred physical activities in people with MS. Here, walking was reported as the most commonly practiced activity by both genders of people with MS, with stretching and weight training ranking next in the list of preferred activities [18]. Exercise with a physiotherapist, yoga and cycling/roto-pedalling (or pedalling a motomed) were very common among Czech patients. This may be due to the relatively good availability of physiotherapy in the Czech Republic [19] and more favourable conditions for cycling.

Also, when comparing the results within the European-wide study, it appears that patients were most likely to engage in walking, followed by weight training and aerobic exercise in the gym (before the COVID-19 pandemic), home health exercise (during the COVID-19 pandemic) and water exercise (before the COVID-19 pandemic) [20]. We consider the representation of both patients at the onset of the disease (less than 1 year after diagnosis) and patients with a disease duration of more than 20 years, who are often missing in exercise studies, to be a strength of the presented sample of Czech patients. The majority of published studies have not addressed exercise in newly diagnosed young or elderly MS patients [21]. Thus, our questionnaire survey may provide valuable information for physicians and physiotherapists who indicate and plan exercise and physical activities for people with MS. In clinical practice, we perceive the lack of motivation to exercise in some persons with MS as a problem. Understanding patient preferences and the complex factors that influence their motivation to exercise is of great benefit to neurologists and rehabilitation professionals. Physically active and inactive patients differ in practical strategies, such as prioritization, firm scheduling of exercise into their schedules, and social support, which are practiced by physically active patients [22]. Therefore, various educational and motivational events may be useful to alert patients to the importance of regular exercise and appropriate practical strategies. Planning realistic and achievable goals and possibly increasing patients' self-confidence is also important [23]. Environmental factors such as special exercise classes for patients with disabilities, trained exercise instructors, wheelchair access to sports facilities, etc. also seem to be essential for long-term adherence to regular exercise [24].

Also interesting are the findings on the use of modern technologies and telerehabilitation during the COVID-19 pandemic, when their use was generally widespread [20]. MS patients most commonly use wearable devices to record movement (devices such as Fitbit smartwatches, etc.) or watch exercise videos. However, these are often exercise videos designed for the general healthy population and not specific exercises for neurological patients who may be limited in their movement by symptoms such as spasticity, balance disorders, etc. Thus, knowledge about the movement activities performed can also help in creating exercise videos designed for patients or for conducting synchronous telerehabilitation. According to experts, a hybrid model combining telerehabilitation and conventional rehabilitation seems to be suitable for MS patients [20,25]. In telerehabilitation, the possibility of tactile guidance and correction of the patient is lost. And also the examination options are very limited. A serious limitation may be cognitive difficulties or increased risk of falling in people with higher levels of disability. Probably for these reasons, the most frequent use of telerehabilitation has been reported in people with MS with low neurological disability [25].

A limitation of this study is that the results were based only on subjective patient reports without the addition of objective measurements, which would probably be difficult to ensure in such a large sample of patients.

 

Conclusion

Data from Czech MS patients collected as part of an international study provide new information on the most common types of physical and exercise activities, which have not changed much even during the coronavirus pandemic. Although the total number of people with MS engaging in physical activity decreased significantly during the pandemic. In contrast, there was an increase in the use of telerehabilitation and modern technologies to support physical activity during the COVID-19 pandemic. The findings on the exercise habits of MS patients may help treating neurologists in recommending physical activities.

 

Ethical aspects

The work was carried out in accordance with the 1975 Helsinki Declaration and its revisions in 2004 and 2008 and was approved by all ethics committees of the respective universities as part of an international questionnaire project. In the Czech Republic, the study was approved on 15 February 2021 by the Ethics Committee of the 3rd Faculty of Medicine of Charles University (No. Rasova2021b).

 

Grant support

Supported by RVO grant VFN 64165, grant of the Ministry of Education and Science of the Czech Republic -⁠ Cooperatio LF 1-Neuroscience project and grant of the Ministry of Health of the Czech Republic-NU22-04-00193.

 

Conflict of interest

The authors declare that they have no conflict of interest in relation to the subject of the study.

 

Table 1.Demographic and clinical characteristics of the respondents (n = 265, 55 men).

Age of respondents	Disease duration	Duration of MS symptoms
18-34 years: 34 persons (13%) 35-44 years: 87 persons (33%) 45-54 years: 83 persons (31%) 55-64 years: 40 persons (15%) over 65 : 21 (8%)	less than 1 year: 6 persons (2%) 1-4 years: 45 persons (17%) 5-10 years: 63 persons (24%) 11-15 years: 61 people (23%) 16-20 years: 31 persons (12%) over 20 years: 57 persons (22%)	less than 1 year: 3 persons (1%) 1-4 years: 28 persons (11%) 5-10 years: 66 persons (25%) 11-15 years: 63 persons (24%) 16-20 years: 38 people (14%) over 20 years: 66 persons (25%)
PDDS	Who provides exercise support	Disease COVID-19
PDDS 0 : 38 persons (14%) PDDS 1 : 42 persons (16%) PDDS 2 : 43 persons (16%) PDDS 3 : 60 persons (22%) PDDS 4 : 45 persons (20%) PDDS 5 : 14 persons (5%) PDDS 6 : 19 persons (7%) PDDS 7 : 4 persons (1%)	I have no help/support: 68 people (26%) Partner/child: 77 persons (29%) other family member: 15 persons (6%) Caregiver: 3 persons (1%) Friend: 19 persons (7%) do not need help/support: 83 people (31%)	Yes, experienced without effect on MS symptoms and physical activity: 33 people (12%) yes and it made my MS worse or limited my physical activity: 33 people (12%) no COVID-19 : 179 people (68%) Not sure: 20 people (8%)

n -⁠ number; PDDS -⁠ Patient Determined Disease Steps

0...Very mild discomfort, mostly sensory, which does not limit physical activity, usually the symptoms disappear after the attack subsides.

1...I have some mild MS symptoms that have little effect on my lifestyle.

2...I do not have a limited ability to walk, although MS otherwise causes me limitations in various normal activities.

3...MS interferes with my activities, especially walking. I can work, but sports or overly strenuous activities are difficult for me. I don't usually need to walk with a cane or other support, but sometimes when aggravated or ataxic I will use it.

4...I use a cane or crutch or other support (hold on to a wall or someone's arm) when walking, especially when walking outside. I could walk/ear the 8 meter walk test in 20 seconds without a support. When walking around the block outside (about 250m) I need support.

5...I use a cane or other support for the 8 meter walk test. When walking at home, I hold onto furniture or a wall. For longer distances I sometimes use a wheelchair or scooter.

 6...To walk 8 meters I need 2 crutches or a walker. For longer distances I sometimes use a wheelchair or scooter.

7...My main tool is the wheelchair. I can stand or walk a few steps, but the 8 meter walk test is too difficult for me.
 

 

Table 2. Movement activities in the period before and during the pandemic.

	Movement activities in the period before the pandemic				Movement activities during a pandemic
	not exercising/not exercising	more than 1 activity	more than 2 activities	the activity level corresponds to the guidelines	not exercising/not exercising	more than 1 activity	more than 2 activities	the activity level corresponds to the guidelines
PDDS 1 (n = 38)	7 (18,4 %)	19 (50 %)	17 (44,7 %)	26 (68,4 %)	7 (18,4 %)	19 (50 %)	8 (21 %)	22 (57,8 %)
PDDS 2 (n = 42)	6 (14,2 %)	23 (54,7 %)	13 (30,9 %)	23 (54,7 %)	9 (21,4 %)	21 (50 %)	8 (19 %)	19 (45,2 %)
PDDS 3 (n = 43)	5 (11,6 %)	26 (60,4 %)	12 (27,9 %)	28 (65,1 %)	7 (16,2 %)	20 (46,5 %)	8 (18,6 %)	20 (46,5 %)
PDDS 4 (n = 60)	8 (13,3 %)	32 (53,3 %)	19 (31,6 %)	33 (55 %)	15 (25 %)	20 (33,3 %)	7 (11,6 %)	14 (23,3 %)
PDDS 5 (n = 45)	5 (11,1 %)	23 (51,1 %)	10 (22,2 %)	31 (68,8 %)	8 (17,7 %)	26 (57,7 %)	8 (17,7 %)	18 (40 %)
PDDS 6 (n = 14)	0 (0 %)	8 (57,1 %)	4 (28,5 %)	10 (71,4 %)	1 (7 %)	7 (50 %)	2 (14,2 %)	5 (35,7 %)
PDDS 7 (n = 19)	1 (5,3 %)	7 (36,8 %)	3 (21,4 %)	11 (57,8 %)	2 (10,5 %)	8 (42,1 %)	4 (21 %)	7 (36,8 %)
PDDS 8 (n = 4)	0 (0 %)	2 (50 %)	1 (25 %)	2 (50 %)	1 (25 %)	2 (50 %)	1 (25 %)	1 (25 %)
Total (n = 256)	32 (12,5 %)	117 (45,7 %)	79 (30,8 %)	164 (64 %)	50 (19,5 %)	123 (48 %)	46 (17,9 %)	106 (41,4 %)

n -⁠ number; PDDS -⁠ Patient Determined Disease Steps

 

 

Table 3. The most frequently practiced types of physical activities.

Movement activities in the period before the pandemic			Movement activities during a coronavirus pandemic
mild disability (PDDS 0-3) n = 123	moderate disability (PDDS 4-6) n = 119	severe disability (PDDS 7-8) n = 23	mild disability (PDDS 0-3) n = 123	moderate disability (PDDS 4-6) n = 119	severe disability (PDDS 7-8) n = 23
1. walking (n = 56) Cycling 2 (n = 26) 3. yoga (n = 25) 4th run (n = 20) 5. gym exercises (aerobic, weight training) (n = 16) / water activities (n = 16) 6. rehabilitation exercises (n = 15) 7. weight training (n = 13) 8. health exercises at home (n = 8) / team sports (n = 8) 9. pilates (n = 4) 10. balance training (n = 2)	1. health exercises at home (n = 46) 2. walking (n = 44) 3. rehabilitation exercises (n = 23) Cycling 4 (n = 16) / Yoga (n = 16) 5. weight training (n = 14) / water activities (n = 14) 6. balance training (n = 7) 7. gym exercises (aerobic, weight training) (n = 6) / team sports (n = 6) / pilates (n = 6)	1. health exercises at home (n = 11) 2. rehabilitation exercises (n = 8) Cycling 3 (motomed) (n = 5) 4. weight training (n = 4) / water activities (n = 4)	1. walking (n = 68) Cycling 2 (n = 23) 3rd run (n = 21) 4. health exercises at home (n = 18) / yoga (n = 18) 5. weight training (n = 14) 6. rehabilitation exercises (n = 9) 7. pilates (n = 6) / gym exercises (n = 6) (aerobic/strengthening) 8. team sports (n = 3) 9. balance training (n = 2)	1. walking (n = 53) 2. health exercises at home (n = 44) Cycling 3 (n = 18) 4. yoga (n = 12) / rehabilitation exercises (n = 12) 5. weight training (n = 9) 6. balance training (n = 5) 7. pilates (n = 4)	1. health exercises at home (n = 10) 2. rehabilitation exercises (n = 9) Cycling 3 (motomed) (n = 4) 4. exercise in the gym (aerobic/strengthening) (n = 3) 5. weight training (n = 2) / water activities (n = 2) / balance training (n = 2)

Note: only activities with more than 1 response are listed.

n -⁠ number; PDDS -⁠ Patient Determined Disease Steps

 

 

Table 4. Use of modern technologies.

Use of technology in the pre-pandemic period (total users n = 114)			Use of technology during a coronavirus pandemic (total users n = 87)
mild disability (PDDS 0-3) n = 65	moderate disability (PDDS 4-6) n = 43	severe disability (PDDS 7-8) n = 6	mild disability (PDDS 0-3) n = 50	moderate disability (PDDS 4-6) n = 32	severe disability (PDDS 7-8) n = 5
1. body-worn devices (n = 75) 2. exercise app (n = 23) 3. recorded exercise videos (n = 11)	1. body-worn devices (n = 32) 2. recorded exercise videos (n = 13) 3. exercise app (n = 12)	1. exercise app (n = 3) 2. recorded exercise videos (n = 2) 3. physiotherapy website (n = 1)	1. body-worn devices (n = 52) 2. exercise app (n = 13) 3. recorded exercise videos (n = 15)	1. body-worn devices (n = 14) 2. recorded exercise videos (n = 13) 3. online live exercise on phone or tablet (n = 7)	1. recorded exercise videos (n = 3) 2. physiotherapy website (n = 1) 3. body-worn devices (n = 1)
Most often used for the following activities			Most often used for the following activities
1. walking (n = 34) 2. running (n = 16) / cycling (n = 16) 3. exercise in the gym (n = 11)	1. walking (n = 27) 2. exercises by physiotherapist at home/health exercises (n = 19) 3. exercise with physiotherapist (n = 5) 4. cycling (n = 4)	1. exercises by physiotherapist at home / health exercises (n = 3) 2. exercise with physiotherapist (n = 5) 3. cycling (n = 1) / weight training (n = 1)	1. walking (n = 23) 2. yoga (n = 13) 3. cycling (n = 11)	1. walking (n = 14) 2. exercises by physiotherapist at home / health exercises (n = 12) 3. yoga (n = 5)	1. exercises by physiotherapist at home / health exercises (n = 2) / exercises with physiotherapist (n = 2) / other (n = 2) 2. balance training (n = 1)

n -⁠ number; PDDS -⁠ Patient Determined Disease Steps