Perspectives of people with myasthenia gravis on physical activity and experience of physical activity advice from health professionals in the Australian context: a qualitative study

Abstract

Purpose

Physical activity is an important modifiable determinant of health. There has been a historical aversion to movement in people with myasthenia gravis (MG) due to the pathophysiology of the disease, however, research suggests engagement in physical activity is safe and does not exacerbate symptoms. There are currently no studies investigating the qualitative perspectives of people with MG on physical activity. The aim of this study was to explore perceptions of physical activity, barriers, enablers, and participants’ experiences of physical activity advice from health professionals.

Materials and methods

Semi-structured interviews were used, with verbatim transcripts analysed using content analysis.

Results

Ten adults (median age 64.5 years) living in Australia with generalised MG were interviewed. Key findings were identified: (1) Physical activity is perceived to be important for general health and for MG; (2) Medical management and social support are key enablers; (3) Fatigue and pain are potential barriers; and (4) Experiences with healthcare professionals were considered insufficient and failed to provide disease specific advice regarding MG and physical activity.

Conclusion

People with MG have unique barriers and enablers to physical activity engagement that clinicians should consider when providing physical activity behaviour change support to this population.

IMPLICATIONS FOR REHABILITATION

• Physical activity is perceived positively by people with myasthenia gravis, both due to the general benefits and disease-specific impacts, however unique barriers such as fatigue and pain can make physical activity engagement challenging.

• Tailored physical activity behaviour change support is recommended to consider these barriers on an individual level.

• Effective interprofessional collaboration is important in ensuring medical management is optimised to enable greater physical activity participation, and behaviour change techniques involving social supports may warrant consideration.

• Health professionals should seek to improve their understanding of myasthenia gravis to deliver evidence-based, person-centred approaches to physical activity promotion in this population.

Keywords:

• Myasthenia gravis
• physical activity
• barriers
• fatigue
• qualitative

Introduction

Myasthenia gravis (MG) is an autoimmune condition characterised by skeletal muscle weakness and fatigue, with weakness exacerbated by repetitive muscle contractions due to dysfunction at the neuromuscular junction where antibodies prevent efficient neuromuscular transmission to the skeletal muscle [1]. While there is no cure for MG, medical treatment typically consists of pharmaceuticals including immunomodulating therapies such as corticosteroids and acetylcholinesterase inhibitors [2].

Individuals with MG appear to be less physically active than the general population [3], and consequently might be at a higher risk of developing a lifestyle related disease [4]. The benefits of physical activity for health have been widely recognised in the general population, particularly with evident reductions in all-cause mortality risk [5,6]. Emergent evidence in MG suggests physical activity has correlations to positive health factors evidenced through patient surveys and clinical evaluation [7,8]. Health professionals have identified a lack of knowledge as a barrier to encouraging their patients to participate in physical activity across a wide variety of chronic conditions [9]. This is true for individuals with MG where health professionals have been previously hesitant to prescribe any form of exercise [10]. Recently, evidence has demonstrated that exercise is safe for people with MG [11] with higher levels of physical activity correlating with improved health outcomes [8].

No studies to date have explored the perspectives of people with MG with respect to physical activity or their experience with physical activity advice when interacting with health professionals. Therefore, the aim of this study is to gain an understanding of perceptions of physical activity including identification of barriers and enablers in patients with MG, and their experiences with health professionals in the provision of physical activity advice.

Materials and methods

Study design

Qualitative semi-structured interviews were conducted over the phone, via Zoom, or in person, according to patient preference. Each interview was approximately 30 min in duration and contained a series of questions relating to current engagement in physical activity, perspectives on physical activity, barriers and facilitators, and questions pertaining to what (if any) advice participants had received regarding physical activity from health professionals. The interview guide is provided in Supplementary File 1, which was developed by the authorship team based on the research questions. Interviews were recorded and audio was separated from video for transcription. Each interview was transcribed verbatim, with transcripts deidentified. The research team included three physiotherapists (TA, KW, SG) from the School of Health and Rehabilitation Sciences at The University of Queensland, and one exercise physiology student (MC). The interviews were conducted primarily by the exercise physiology student under the direct supervision of one of the three researchers, where the more senior researchers were able to interject if required (two of whom have doctorate level qualifications and all three have a background in qualitative research, and expertise in physical activity and neurological conditions). Ethics was approved by The University of Queensland Human Research Ethics Committee (2019000774) and written informed consent was obtained before enrolling participants.

Participant selection

People with MG, who resided in Queensland, Australia and had completed a previous cross-sectional study, were recruited via inviting expressions of interest to participate in a face-to-face study component, which would include this qualitative study [8]. For inclusion, participants were asked to confirm that they had received a diagnosis of MG from a specialist medical professional, be aged 18 years and over, and residing in Australia. Any persons with autoimmune MG, either ocular or generalised, were eligible to participate. All respondents were screened by telephone to ensure demographic and symptom-based data provided in the self-report survey were accurate.

Demographics and clinical characteristics

Previously collected patient reported outcomes were used to obtain data in regard to age, disease severity, body mass index, gender, mobility aid use, pharmacological treatment, level of education, employment status, walking limitation, balance confidence, fatigue, health related quality of life and self-report physical activity and sedentary behaviour, with methods described elsewhere [8].

Data analysis

Data collection and analysis occurred simultaneously so that interview focus was guided by the analysis of former interviews, with collection occurring until thematic saturation was reached (where no new themes were extracted from the data). Two authors (TA, MC) independently carried out content analysis in four steps described by Kleinheksel et al. [12]. Firstly, units of meaning were identified. Then, these units were labelled with a code. Similar codes were then arranged into categories, and finally, related categories were described with a theme. Both authors (TA, MC) engaged in professional discussion to organise the findings and reach consensus on the themes. A third author (KW or SG) was consulted in the event of discrepancies in interpretation of the data.

Results

Qualitative interviews were conducted with 10 participants. All participants opted to complete their interview remotely via Zoom or phone. Demographic and clinical characteristics extracted from previously published work [8] are presented in Table 1. The median age of participants was 64.5 years, 70% were female (n = 7) and all were diagnosed with generalised MG. All participants were independently mobile without an aid. Eighty-percent (n = 8) of participants were considered sufficiently physically active as per public health guidelines [13]. The median sitting time was 10 h/day.

Table 1. Participant characteristics.

Characteristic	N = 10
Age, years	64.5 [10]
Female, n (%)	7 (70)
Body mass index	26.4 [5.1]
Disease duration, years	2 [1]
Treatments^a, n (%)
Thymectomy	3 (30)
Plasmapheresis	0 (0)
IvIG	7 (70)
Anticholinesterase medications	8 (80)
Immunosuppressive medications	5 (50)
Number of treatments, n (%)
0	1 (10)
1	1 (10)
2	3 (30)
3	4 (40)
4	1 (10)
Myasthenia Gravis Composite Score^b	17 [4]
Myasthenia Gravis Foundation of America Scale (MGFA), n (%)
Class I	0 (0)
Class IIA	4 (40)
Class IIB	1 (10)
Class IIIA	4 (40)
Class IIIB	0 (0)
Class IV	1 (10)
Walk-12g^c	12.5 [13]
Modified Fatigue Impact Scale^d	27.5 [34]
Activities Balance Confidence Score^e	83 [23.6]
MG-QoL-15^f	25 [23]
Total physical activity, METminwk^-1	1016 [2048]
Daily sitting time, hours	10 [6.7]
Gait velocity, metres/second	1.21 [0.2]
6 min Walk Test, metres	420 [121.3]

Notes: MET = metabolic equivalents. All continuous data presented as Median [Interquartile Range].

^a Participants reported on what treatments they have had for their MG.

^b A score out of 50, where higher score indicates more severe impairments.

^c A score out of 42, with higher score indicating greater limitation to walking.

^d Score is out of a possible total of 84, with higher scores indicating greater impact of fatigue on a person’s activities.

^e A percentage out of 100 of perceived balance confidence, with a higher score indicating greater confidence in balance.

^f A score out of 60, with higher scores indicating poorer perceived quality of life.

Main findings

Several themes were identified within the main question areas of perceptions of physical activity, barriers and enablers of physical activity engagement, and experiences with the provision of physical activity advice from health professionals. Figure 1 illustrates a summary of themes.

Figure 1. Summary of findings of the perspectives of participants on physical activity, barriers and enablers and experiences of physical activity advice from health professionals.

Perceptions of and current engagement in physical activity

Physical activity was generally perceived positively and considered important by participants. Participants reported engaging in some level of physical activity, including regularly walking and swimming, or engaging in group classes such as Tai Chi and Pilates:

“I walk the dog every day. I don’t go to the gym or do any sport… I’ve never really been into… strengthening exercises” – P07 (Below median age, above median 6MWT)

“I walk every morning … that starts my day… Every afternoon I do a … stretch and sort of Pilates routine - a very … quiet one, it’s not too energetic… And then 3 days a week I swim” - P06 (Below median age, below median 6MWT)

“I try and walk the dog. Maybe I only manage 20 minutes in the morning and 20 minutes later - I try and do like 35-40 minutes” – P09 (Below median age, below median 6MWT)

Participants highlighted the perceived benefits of movement for their general health and wellbeing including for maintaining fitness, strength, mobility, independence, mental health, weight loss, as well as for enabling greater life participation:

“I think it’s actually really crucial for a number of reasons. It helps me to clear my mind … and to move away from what I’m doing here at work … I think … exercise is good for your body” – P02 (Below median age, above median 6MWT)

“And the more exercise, and the more fit you are … it keeps your metabolism and all that going better for you to … have a longer life” – P10 (Above median age, below median 6MWT)

“Oh it [physical activity] is important, definitely yeah… I know I want to still be able to… travel and go overseas and do things … I am having trouble with my legs currently… and I know that if I don’t get it rectified now, that I’ll just get worse and worse, and I won’t be able to do what I want to do” – P03 (Below median age, below median 6MWT)

These perceptions were linked to historical involvement in physical activity, with those being active prior to diagnosis now citing this as an influence on their current participation:

"Oh it’s… always been important. I’ve been an active person all my life you know, playing sport and… everything else - all the sports I could play… I like to keep [doing] it. Yeah, it’s very important” – P01 (Above median age, above median 6MWT)

Despite this, participants reported their physical activity was altered and/or more challenging following the onset of MG:

“I already had the routine established beforehand. It’s just now I do a quarter to half of what I used to be able to do … I used to walk for up to an hour every morning but… I’m down to about 10, 15 minutes now” – P06 (Above median age, below median 6MWT)

“I think it [physical activity] makes a huge difference truly … I’ve really got to force myself but with the weakness as well I know it’s good for me and I know I must do it. I really have to do what I can to get out there every day” – P04 (Above median age, below median 6MWT)

However, participants did perceive physical activity to be beneficial for their MG specifically, noting that they felt the maintenance of sufficient physical activity was important in anticipation of a relapse, for management of symptoms and for prevention of deterioration of function:

“I worry about a relapse of the disease … I want my muscles to be as strong as possible… if I were to relapse” – P08 (Below median age, above median 6MWT)

“With MG if we don’t maintain some physical fitness… then it makes everything worse” – P07 (Below median age, above median 6MWT)

“Whatever little bit of exercise you can do is going to help you immensely. If you stop doing it, then you go downhill” – P06 (Above median age, below median 6MWT)

Barriers of physical activity

The most frequently reported barriers to physical activity were symptoms such as pain, muscle weakness and fatigue. When participants spoke about pain, they referred to joint or muscle pain that was inconsistently attributed to MG. Some participants were unsure of the aetiology of their pain, but did note its significance in reducing their capacity and/or motivation to engage in physical activity:

“If it’s [joints] sore, I guess it’s an easy excuse I suppose to… just have a rest… when perhaps what I should be doing is… biting the bullet and just going for a walk around the block” – P02 (Below median age, above median 6MWT)

Several participants noted experiencing muscle weakness that was exacerbated by physical activity and fatigue:

“If you [are] continually doing something … you fatigue, you know all your muscles just don’t seem to coordinate as good” – P01 (Above median age, above median 6MWT)

“I think that both fatigue and the pain get worse when I exercise. Which is probably not a good thing for encouraging me to do it… definitely my pain… increases and you know I get tired” – P02 (Below median age, above median 6MWT)

“Like say I used to do 30 laps [swimming] at that time and so I pushed myself to do that 30 and when I got out the pool the legs just went from underneath me and I had no strength” – P06 (Above median age, below median 6MWT)

Some participants talked about their tendency to be conservative when engaging in physical activity due to their MG symptoms, which sometimes limited how much they did for fear of exacerbating symptoms, falling or being unable to get help if needed:

“I think it just fluctuates. I guess that’s what everybody says, but there’s been … times when I had to sort of think about and plan what I was doing and … it could limit … the walking” – P07 (Below median age, above median 6MWT)

“I’ve just gotta be careful then that I don’t sort of … have falls or anything like that. That [fatigue] can be a warning sign for me that could happen today. So, I just … stay sort of more or less inside and don’t go out too much” – P05 (Above median age, above median 6MWT)

“I guess things … like … swimming unattended (alone) I guess. [If] I was swimming and no one was around that could be a risk… but I guess I wouldn’t go and swim in the ocean on my own necessarily … And just the same as … bush walking - a far distance in the heat of the day generally is not a smart idea. … If I didn’t have my medication or I suddenly just became very weak I wouldn’t be able to get back” – P07 (Below median age, above median 6MWT)

To combat fatigue participants noted the need to rest which they reported as often overwhelming as all activities were ceased or temporarily paused. Participants reported a conscious effort to self-pace and moderate the activities engaged in to manage fatigue:

“You tend to know your body a little bit and as I say if you’re walking… for a long period of time… if your legs are starting to feel a little bit weak… you can’t keep on going… you gotta take it a bit easier… with jogging… you know that you haven’t got the strength…but after a period of time… your bodies telling you ‘no that’ll do you right now’” - P01 (Above median age, above median 6MWT)

Enablers of physical activity

Among the most frequently reported enablers to physical activity was the effective management of their MG symptoms using pharmaceutical interventions:

“Now that they got me on the right balance of medication, you know, I reckon I’m about 80%, normal” – P01 (Above median age, above median 6MWT)

Each participant shared their journey with receiving medical treatment and reported improvement in their quality of life and functional capacity. Participants mostly indicated that successful pharmacological treatment alleviated their fatigue and enabled them to resume a relatively normal life; allowing them to participate in physical activity more easily:

“The medication and everything has stabilised most things… so I wouldn’t say in the last 2 years it’s [MG] really impacted me too much in terms of keeping active but in the beginning it did” – P07 (Below median age, above median 6MWT)

“With the medications and infusions I have and everything else, I’m pretty good. So, I can do most things now anyway … I walk the dog, play golf, and various things and … I’m really my wife’s carer” – P01 (Above median age, above median 6MWT)

Social support was also reported as a facilitator for physical activity. Walking with partners, dogs, or friends was the most common form of social support followed by group-based classes, where they provided a source of enjoyment and motivation as well as a sense of belonging:

“We’ll often go for a walk … we can have a chat at the same time…” – P02 (Below median age, above median 6MWT)

“You know, we have fun… and we’re all there together we’ve all got something…one guys got heart failure… some people have got different disabilities or whatever” – P10 (Above median age, below median 6MWT)

This social support could help to alleviate the barriers relating to fear of or actual exacerbation of symptoms while engaging in physical activity by providing a sense of safety in having another person present:

“I’m conscious that I should walk with other people but I don’t always do that like unless it was really far which I guess is just a general safety principle anyway” – P07 (Below median age, above median 6MWT)

Additionally, a local pathology specific support group was mentioned by several participants who indicated that they appreciated the knowledge provision and social aspect of attending the meetings. Information provided or discussed was used to inform their decision making around physical activity, as well as providing an opportunity for providing and receiving support to and from others within the MG community:

“It’s … cool [to] talk to each other and help others who might be struggling through things and discuss things together and all that sort of thing. … The Myasthenia Gravis Association is a good thing … for people to be in, in my case. And for me it’s more like giving back a little bit too. Even though I feel not too bad I go to see if I can help others” – P01 (Above median age, above median 6MWT)

“They have handouts about keeping active and… I’ve read the research around some of the exercise programs… that it’s beneficial… so that’s sort of the messaging we get from the MG association that it’s important to keep active” – P07 (Below median age, above median 6MWT)

Experience with physical activity advice from health professionals

Many participants felt the care provided to them by their health professionals in regard to the management of their MG was inadequate. Participants felt that some health professionals were not aware of MG generally, and even less so of the role of physical activity in its management:

“Most of them [health professionals] don’t know [what MG is]. And my GP that I had … I was the only patient … that had MG.” P10 (Above median age, below median 6MWT)

“You could ask them [about MG] until you’re blue in the face, and they just haven’t got answers for you” – P05 (Above median age, above median 6MWT)

This was said to create a sense of distrust:

“I guess there’s a lack of trust … I just don’t really trust … a lot of health professionals. I would sort of need to be recommended and know that they have done some research about it [MG]” – P07 (Below median age, above median 6MWT)

Some participants reported being discouraged to engage in physical activity by health professionals and felt this was a result of a lack of knowledge on the professionals’ part:

“I guess it was kinda like, ‘Well, we don’t understand it so maybe you shouldn’t come’ [to a group exercise class]. … Maybe you shouldn’t do it anymore’, and I was like ‘Mmm I’m pretty sure I can still do it’ - I just need someone who knows [about MG]” – P07 (Below median age, above median 6MWT)

“I know if I said I had MG nobody would be able to look after me. In a gym they’d still just push you to do… everything even though I used to … hand them the book and everything else so they could read it” – P10 (Above median age, below median 6MWT)

One participant expressed that muscle fatigue was made worse by unknowing practitioners in a group exercise setting and considered this a result of a lack of understanding of MG:

“I used to do regular Pilates for several years. … I stopped that when my MG started because the physios weren’t knowledgeable about MG, and they were making it worse. Because of the nature of MG so like the repetitive muscle movement was like making the symptoms worse. They would just be like ‘do it again’, and I’d be like, ‘My arms literally can’t move’, and then they’re like, ‘Well okay, just try it this way’. I’m like, ‘Well, my arms can’t move…’ and they’re like, ‘Okay just try and hold it for 5 seconds’… they just didn’t understand what it was I think” – P07 (Below median age, above median 6MWT)

Some participants had received general physical activity advice, however, many had not received any tailored advice with respect to their MG specifically:

“Yeah… I think like the doctors they always sort of ask about it [physical activity] and then … I think they’re encouraging of you … generally sort of keeping active. But then, I guess they don’t … really know – they just sort of say ‘keep active’, do you know what I mean?” – P07 (Below median age, above median 6MWT)

“Umm. No. [laughs]… you know what they’re like… they’re just, you’re in there for 5 minutes, have a chat, oh yeah you’re all good and out the door you go.” - P02 (Below median age, above median 6MWT)

Rather than sourcing information about physical activity from health professionals, participants reported independently sourcing information by other means:

“My very dear friend…She does a lot of research [about physical activity for MG] for me and with me.” – P05 (Above median age, above median 6MWT)

“I’ve been looking on Google and that to exercise you know” - P01 (Above median age, above median 6MWT)

Despite a lack of professional advice, participants had developed their own strategies of management via trial and error, for example by adapting their physical activity in response to their symptoms. They reported manipulation of duration, intensity, or frequency of physical activity, as well as the provision of regular rests, in response to their perceived capacity for movement:

"It’s a case of too knowing where your limits are and remembering to push yourself just that little bit” – P06 (Above median age, below median 6MWT)

“I have to have a bit of a rest or you know the fatigue is there a little bit but not too bad… [If I] have a little rest and then I’m right again and I’ll keep on going” – P01 (Above median age, above median 6MWT)

“The only thing is to remember just how far you can go. If you push yourself too much, you’re in trouble”. – P06 (Above median age, below median 6MWT)

Discussion

To our knowledge, this is the first qualitative study to explore the perspectives of people with MG on physical activity generally, barriers and enablers to physical activity, and experiences with health professionals in the provision of physical activity advice. Recent evidence supports that exercise is safe and effective for improving strength and function in people with MG despite historical aversion to movement amongst people with MG and clinicians. The findings of this study indicate that the importance of physical activity for health and MG management is recognised by this sample of people with MG, but often adaptation is needed due to barriers like fatigue and pain, and effective medical management is important to enable physical activity. Participants felt that they receive insufficient and inadequately tailored advice from health professionals, which can create a sense of distrust. It is important for health professionals to promote physical activity and to practice person-centred care in delivering tailored physical activity support to people with MG, including consideration of individual level barriers and enablers.

Participants in the present study perceived physical activity positively, both in general and regarding its impact on their MG. This finding complements existing research that despite historical aversion to movement in this population [10], physical activity can be carried out safely and provide benefits for people with MG [11, 14], however, adaptation is often needed [15]. Given the well-evidenced benefits of physical activity, health professionals should be empowered to promote physical activity in this population (including with referral on to other disciplines when appropriate) to ensure alignment with principles of person-centred care, whereby care is tailored to the values, needs and preferences of patients [16].

Reported barriers to physical activity in this study included fatigue and pain. Fatigue is a complex phenomenon defined as the temporary impairment of both cognitive and motor functions with increased desire to rest [17], and has been commonly reported at clinically significant levels elsewhere amongst people with MG [18]. Despite experiencing fatigue, participants in the present study generally felt being physically active was important for their MG symptoms and their general health and wellbeing. As such, participants reported using self-management strategies such as pacing and frequent rests to enable them to continue to engage in regular physical activity despite fatigue. Interestingly, although 80% of the present sample were considered sufficiently active, median sedentary time was high at 10 h/day. Similar sedentary times have been seen previously in this population [7, 8, 19, 20]. At present there is no agreed threshold for daily sedentary time, however, from 7-8 h/day has been associated with greater risk of early mortality [13]. In the present study, participants reported using rests to manage the barrier of fatigue, which in turn helped to enable physical activity. Given rest is likely to involve sedentary behaviour and sedentary behaviour has adverse health effects independent of physical activity [21], it is important for health professionals to consider how to tailor physical activity and sedentary behaviour advice to account for this. This may include focusing on breaking up periods of prolonged sedentary time; a recommendation already endorsed for the general population and those with chronic conditions [9, 22]. Additionally, targeting sedentary behaviour may be an appropriate starting point as a step-wise approach to improving physical activity particularly in those who are highly inactive [23]. However, future research into accumulation patterns of sedentary behaviour and their relationships with physical activity, fatigue, and other symptoms is needed.

Previous research found that lower fatigue is associated with greater physical activity in this population [8], however, the direction of this association remains under investigation. In other neurological populations (such as multiple sclerosis), physical activity interventions have shown promise in reducing fatigue [24], perhaps owed to breaking cycles of deconditioning that can occur particularly in fatigued, physically inactive populations [25]. The relationship between fatigue and physical activity in the MG population warrants further investigation, specifically whether free-living physical activity interventions have potential in mitigating fatigue. Additionally, many participants reported being aware of their limits and being mindful to maintain physical activity within these limits to avoid exacerbation of their symptoms. Clinicians should be aware of and be receptive to exploring these limits collaboratively with people with MG when supporting physical activity engagement. Importantly, focus should align with current evidence that physical activity is safe and beneficial in people with MG [11], and that even modest improvements (moving from doing nothing, to doing something) can have substantial health benefits [26].

Joint and muscular pain was also identified as a barrier to physical activity in the present study, however, it is unclear whether this pain is related to disease processes of myasthenia gravis specifically or other comorbidities. Previous research has found pain to occur in myasthenia gravis, despite unclear links to pathophysiology at this time [27, 28]. Nevertheless, pain is a commonly reported barrier to physical activity in older [29] and overweight [30] adults, and people with long-term neurological conditions [31], all of which reflect the characteristics of the sample in the present study. Health professionals should be aware of this commonly reported barrier and tailor physical activity promotion accordingly.

Effective medical management was identified by participants as a major contributing factor in enabling physical activity participation. This is perhaps not surprising, given MG is considered a highly treatable autoimmune disease with an array of effective interventions available [32]. Thus, it is important people with MG are receiving appropriate medical management to enhance their capability to participate in physical activity, given the well evidenced benefits of this important health behaviour [6]. An additional benefit for this population specifically may lie in the capacity of physical activity to mitigate some side effects associated with the medical management of MG. This includes preservation of bone density following use of corticosteroids [33] and management of side effects such as weight gain, hypertension and diabetes mellitus, where concurrent lifestyle interventions (including targeting physical activity) have been recommended to attenuate the risk of these effects [33, 34]. Health professionals should practice effective interprofessional collaboration to ensure medical management is optimised during efforts to support improved physical activity.

When participants in the present study were asked to share their experiences with receiving physical activity advice from health professionals, most participants either had received no advice or had a sense of distrust in the advice they were receiving due to a perception of a lack of knowledge and understanding of MG. This feeling of a disconnect with health professionals has been previously identified in this population [15, 35]. This is concerning, given health professionals are well placed to provide physical activity promotion. The World Health Organization has identified health care settings as a key context for the provision of physical activity promotion in the pursuit of reduced global rates of physical inactivity over the next decade [36]. Even in people without MG, many people accessing health care do not receive physical activity advice [37] and so it is perhaps unsurprising that this is also missing in the care of people with a rare disease such as MG. However, one recent qualitative study found that even in circumstances where allied health professionals were not familiar with MG, people with MG valued a demonstrated willingness to learn from their health professionals and this was an important determinant of their experience of that interaction [35]. While allied health interventions are integrated into standard care for several neuromuscular disorders they unfortunately appear often dismissed in the context of MG and overlooked in favour of pharmacological treatment, rather than considered as an adjunct [35]. For example, recent evidence notes only 50% of people with MG had been referred to physiotherapy [38]. As a key group to enhance physical activity in person with any neuromuscular pathology, this lack of referral is concerning. Concurrently, discrepancies in the knowledge and skills of health professionals may lead to missed opportunities to support physical activity in this population. Ultimately, the aim is to thus provide individuals with MG specific, interdisciplinary care to optimise outcomes [14].

A strength of this research was the qualitative approach that allowed for in-depth exploration of participant’s perspectives on physical activity, not previously been explored to our knowledge. Credibility was optimised by having two authors independently analyse data before discussing to reach consensus, with a third author available to discuss discrepancies. Data saturation was observed during the interview process, with no new themes emerging after the fifth interview. A limitation of this research was the potential for recruitment bias, given participants were recruited following an online survey investigating physical activity and were a part of a subgroup that had agreed to participate in device-based activity monitoring. The participants in our sample were potentially more inclined to be physically active for this reason, with a high proportion of the participants reporting sufficient physical activity levels (80%) compared to what has been identified in some previous samples of people with MG (62%,[8] 78% [20] and 100% [7]). Differences in methods may also explain the variability across studies, given discrepancies have been identified between self-report and device-based measures of physical activity [39]. Given the average age of participants, this data may not be representative for other age groups with MG who may be in different stages of life. Similarly, only persons with generalised MG were interviewed, the perceptions physical activity, barriers, enablers, and health professional of those with ocular MG may be different. Given some variability in the prevalence of physical inactivity in this population across the literature, it will be of benefit to explore these perceptions in less active samples, and for clinicians to explore individual perceptions, barriers and enablers when supporting individuals in changing these behaviours. Both age and alternate forms of MG warrants further investigation to better understand how physical activity participation is affected by MG subtype and across the life span. Pain was noted as a barrier to physical activity in this study, however, it is unclear how or if this relates to MG pathology specifically. As such, clinicians should explore individual barriers and facilitators to physical activity in their patients and tailor behaviour change support accordingly.

The present study explored perspectives of and barriers and enablers to physical activity in a cohort of adults with MG, and explored their experiences with health professionals regarding reception of physical activity advice. Despite physical activity being perceived as important, barriers of fatigue and pain can challenge engagement. Medical management of MG symptoms and social support was reported to help to enable this important health behaviour, and presently advice from health professionals is perceived as insufficient and lacking in individualisation. Further research is needed to explore health professional perspectives on the provision of physical activity promotion in this population, to aid in identifying future steps to improving tailored physical activity support for people with MG.

Acknowledgements

The authors gratefully acknowledge the Myasthenia Gravis Association of Queensland for their ongoing support, and the participants of this research for taking their time to provide their valuable perspectives.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Additional information

Funding

The author(s) reported there is no funding associated with the work featured in this article.