Healthcare professionals may underestimate the true impact of living with gMG

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Written by Alexion, AstraZeneca Rare Disease

A good relationship between doctor and patient lies at the heart of medicine. It is a balanced partnership characterised by trust, mutual respect, and effective communication. It allows patients to feel heard and understood enough to share vital information, and for doctors to better understand their patients’ challenges, needs and expectations.

In much of Europe, despite greater awareness and treatment progress, generalised myasthenia gravis (gMG) continues to pose significant challenges both for those who live with it and those who treat it. 

As the disease progresses, more severe symptoms can include impaired swallowing, choking, extreme fatigue, and respiratory failure ^1,2,3. The reality is that symptoms like these can significantly affect quality of life to the degree of requiring feeding tubes. ⁴

gMG is a rare autoimmune disorder, characterised by a loss of muscle function and severe muscle weakness. ⁵ gMG can occur at any age, but most commonly begins for women before the age of 40 and for men after the age of 60 ^6,7,8.  Initial symptoms may include slurred speech, double vision, droopy eyelids, and lack of balance ^9,10,11.

A recent collaborative study in Denmark between volunteers from the patient organisation Muskelsvindfonden; Alexion, AstraZeneca Rare Disease; and partners in the Bridge Project, suggests that the root cause of many challenges may be a lack of mutual understanding and difficulty grasping the true impact of gMG on people who live with it. Its results propose a more patient-centred approach to bridge the gap between clinical understanding and lived experience.

Realising the potential of the patient perspective

The Bridge Project was designed with the patient community to foster dialogue with everyone involved in the care of gMG patients, empower those living with gMG to share their experiences with the condition, and raise awareness of the realities of this rare disease.

Carina, who has lived with gMG for almost four decades, is a longstanding Muskelsvindfonden volunteer. She reflects on the changes in conversations around disease burden since her diagnosis:

“There’s a change in young people living with gMG these days. They question their doctors – ‘are you really sure you can’t change things? That it [my condition] can’t be better?’. The younger generation is more demanding and more informed, realising they can try to work full time and get outside and live their lives. And doctors are better at explaining what gMG is and how exactly it might affect your life. I kind of envy them because the doctors know so much more than when I got my diagnosis and treat patients very differently”.

Determined to further understand the range of symptoms of gMG and how they impact everyday life, Muskelsvindfonden volunteers and the Bridge Project team developed a qualitative patient survey. The survey gathered insights from people living with gMG, support organisations, and healthcare professionals (HCPs), to compare how perceptions of the disease are aligned, and where they differ.

The survey was quality assured with input and feedback from members of the patient community, HCPs, and expert research partner, Alcimed. Validation from people living with gMG in particular was crucial to ensuring the survey questions addressed all aspects of the patient experience, included diverse patient voices, and would ultimately help HCPs identify areas for improvement across the care they provide.

As Carina points out, capturing the full experiences of people living with gMG is about more than simply taking medicine and saying “Let’s see if it’s working. Because this is your life, you have to learn how to live with it and there is all kind of uncertainty floating around.” 

Revealing lived experiences

A total of 46 people living with gMG participated in the Danish survey. Their answers confirmed that the daily impact and burden of gMG is variable and depends on severity of symptoms.

Carina explains that every person’s symptoms can be unique, comparing herself to a friend and colleague at Muskelvindfonden:

“I am mostly stable at the moment. I do all the gardening, get up and down stairs at home, and walk five or six kilometres at a time. I actually just got back from the mountains in Iceland! Whereas my friend is very different in what she can and can’t do. She works hard on behalf of people living with gMG but she’s not physically active like I am—even walking can be difficult”.

While Carina’s symptoms are largely stable, people living with gMG still perceive the disease as having a medium-high impact on their life. According to the survey, quality of daily life was impacted for 89% of participants, social lives for 87%, and private lives for 84%. Highlighting the non-physical impacts, all participants reported being affected emotionally and said symptoms impacted their ability to work and, as a result, their financial wellbeing. 

An exploration of gMG participants’ experiences revealed that most (93%) live with a range of symptoms that are not always obvious. Symptoms reported as having the greatest impact on quality of life included:

1. shortness of breath (55%)
2. double/blurred vision (51%)
3. fatigue (51%)
4. challenges with chewing and swallowing (49%) 

Respondents also said their physical symptoms make it hard to participate in hobbies or sports, increased the amount of planning needed to conduct their daily lives, and sometimes made even simple activities like driving, eating, and bathing difficult. 

It is likely that better HCP understanding of these individual needs would allow for more effective disease management, potentially reducing the far-reaching impact on their lives.

Establishing goals of care

One potential improvement proposed by people living with gMG as part of the Bridge Project was to develop a discussion guide for appointments to help patients and doctors get the most out of their time together. 

Carina reflected that, when she was first diagnosed, she “always forgot the questions I had to ask my doctor” and relied instead on her mother’s notes. She added that clear information would be hugely valuable at the outset of a person’s journey with gMG.

“Something you could physically get your hand on when you are diagnosed would be so useful. A resource you can also show your closest family, colleagues. Children. Because you have immediate questions: What is it? What does it do? What does it mean? Will it kill me? You can read a lot on the internet but you need to know that information is reliable”. 

Mapping the patient journey 

Visualising the gMG patient journey from the patient perspective is crucial to fully understanding the experience of people living with gMG and what does and does not contribute to good care. 

The survey highlighted that 93% of survey participants suffer from one or more symptoms and 91% take multiple medicines to control them, often making trade-offs between symptom control and treatment burden.

Questions around the diagnostic process returned interesting results – 59% reported that they were diagnosed within three months and 65% of patients ranked their physician as their main source of disease information, followed closely by patient organisations and social media. However, 61% of respondents reported not feeling fully informed about alternative treatment options.

Half of participants said they visit their doctor at least every six months with 61% of participants reporting that their doctors used a scale to monitor development of their disease. That a disconnect between perceived burden still exists, despite regular touch points and measurement of disease progression, further underlines the need for better communication. 

Carina is complementary about the care she receives but also explains that sometimes the patient journey doesn’t allow for detailed discussion: “I could probably be better with my disease but I don’t really talk about treatment with my doctor. Since Covid-19 we have really only talked on the phone. They ask how I’m doing. I say ‘fine, great’, and that’s it. ‘Talk to you in six months”. 

However, she adds that HCP conversations have progressed in recent years: “They listen to how your daily life is going, not only the MG, but also how you’re actually feeling day to day”.

Key learnings 

1. The emotional journey: Emotions vary throughout gMG patient journey – balancing fear and uncertainty, while accepting and adjusting to unpredictable effects on day-to-day life.
2. Understanding diagnosis: Danish people living with gMG (plwgMG) need more information about what to expect in terms of life after diagnosis. This may come down to the need to raise HCP awareness of the reliability/sensitivity of key tests for gMG, when specialist referral is required, and communicating to avoid uncertainty.
3. Accessing information: plwgMG would benefit from being made aware of local rehabilitation and support services available to them, as well as local community stakeholder meetings.
4. Treatment options and guidelines: plwgMG feel relief and acceptance knowing about treatment options, and generally well-cared for and treated, but would like more information. National guidelines and treatment option-led decision trees should be disseminated to all neurologists.
5. Preparing for follow-up: Although hopeful, plwgMG can feel confused when preparing for appointments. Letters designed to help patients prepare questions and follow-up questionnaires (for completion at home) would be useful.
6. Strengthening support: Thanks to patient groups, plwgMG generally feel well-supported. A new, more positive image of gMG would however be welcomed, alongside inspiring resources such as patient case studies or podcasts.

Continuing better communication

The Bridge Project has been a continual process, with surveys first carried out in Switzerland in 2021. The Danish results validate the previous insights, showing a trend in the need for treatment change and better communication with HCPs. 

No two experiences of people living with gMG will ever be the same, but the importance of continuously improving the understanding of the everyday reality of living with such a disease is universal. As Carina highlights, it is important that patients “can ask and answer all the questions they have – what, if, when, how, where”. 

The Danish results of the Bridge Project show that more can be done to improve communication and understanding of gMG patient experiences. The participation of HCPs and professionals in this exercise is illustrative of the commitment that already exists within the healthcare system. It is now a case of deepening partnership between patients, patient groups, and HCPs to make sure that perceptions and understanding of living with gMG truly align – and most importantly that people living with gMG continue getting the support and care that they deserve. 

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This article has been sponsored and authored by Alexion, AstraZeneca Rare Disease.

GL/NP/0170

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References

[1] Myasthenia gravis fact sheet. National Institute of Neurological Disorders and Stroke. Retrieved July 28, 2021. Available at : https://www.ninds.nih.gov/sites/default/files/migrate-documents/myasthenia_gravis_e_march_2020_508c.pdf

[2] Ding J, et al. BMC Neurol. 2020;20(1):238. doi:10.1186/s12883-020-01805-1

[3] Melzer N, et al. Clinical features, pathogenesis, and treatment of myasthenia gravis: A supplement to the guidelines of the German neurological society. J Neurol. 2016;263(8):1473–1494.

[4] Cereda E, et al. Nutrition. 2009;25:1067-1022

[5] Howard JF Jr. Ann N Y Acad Sci. 2018;1412(1):113-128.

[6] Myasthenia Gravis Foundation of America. Retrieved July 29, 2021. Available at: https://myasthenia.org/Professionals/Clinical-Overview-of-MG

[7] Myasthenia gravis. National Organization for Rare Disorders (NORD). Retrieved July 29, 2021. Available at: https://rarediseases.org/rare-diseases/myasthenia-gravis/

[8] Sanders DM, et al. Muscle Nerve. 2021;63(2):209-216.

[9] Myasthenia gravis fact sheet. National Institute of Neurological Disorders and Stroke. Retrieved July 28, 2021. Available at : https://www.ninds.nih.gov/sites/default/files/migrate-documents/myasthenia_gravis_e_march_2020_508c.pdf

[10] Ding J, et al. BMC Neurol. 2020;20(1):238. doi:10.1186/s12883-020-01805-1

[11] Melzer N, et al. Clinical features, pathogenesis, and treatment of myasthenia gravis: A supplement to the guidelines of the German neurological society. J Neurol. 2016;263(8):1473–1494.

[12] ASSRIM. Retrieved November 11, 2024. Available at: https://asrimm.ch/actualite/conference-la-myasthenie-grave-et-son-impact-au-quotidien

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