Prevalence and Impact of Fatigue in Myasthenic Patients Followed At Clermont-Ferrand University Hospital - "My" Asthenia
This study, called "My" Asthenia, is taking place at Clermont-Ferrand University Hospital in France and focuses on people living with myasthenia gravis, a condition that causes muscle weakness. The main goal is to understand how common and how much of an impact tiredness, or fatigue, has on patients' lives. Researchers will ask eligible patients to complete several questionnaires, either online or on paper. These questionnaires cover how myasthenia gravis affects daily activities, overall quality of life, and different aspects of fatigue. They will also look at patients' existing medical records to gather information about their health, such as other medical conditions and treatments, to see if these factors are linked to their fatigue. The study hopes to shed more light on this important symptom.
At a glance
What is this study about?
This research project, known as the "My" Asthenia study, is happening at Clermont-Ferrand University Hospital in France. It's designed for people who have myasthenia gravis, a condition where your body's immune system mistakenly attacks your muscles, leading to weakness. The study wants to find out more about a common symptom called fatigue – that's when you feel very tired and lack energy, even if you've rested. The researchers want to understand how often people with myasthenia gravis experience fatigue and how much it affects their daily lives.
To do this, the study team will get in touch with patients who meet certain criteria. They will ask these patients to fill out a series of simple questionnaires. These questionnaires use well-known scales that help measure things like how myasthenia affects daily tasks, your general well-being, and different types of tiredness. You can complete these questionnaires either online using a special link or by filling out a paper form if you prefer. The researchers will also look at information already in your medical records, such as your age, other health conditions you might have, how your myasthenia has progressed, and the treatments you've received. This will help them see if any of these factors are connected to the fatigue you experience.
Essentially, the study aims to gather a clear picture of fatigue in myasthenia gravis patients. By understanding more about this symptom, including common patterns and what might make it better or worse, healthcare professionals can hopefully develop better ways to support patients and manage their fatigue in the future. Your involvement could help improve the understanding and care for many others living with myasthenia gravis.
Key takeaways
- This study focuses on understanding fatigue in myasthenia gravis patients.
- Participation involves completing questionnaires and allowing review of existing medical records.
- It does not involve new treatments or extra hospital visits.
- The study takes place at Clermont-Ferrand University Hospital.
- It aims to improve future understanding and care for fatigue in myasthenia gravis.
- You can withdraw at any time without affecting your normal care.
Who may be eligible?
To be considered for this study, you would need to be an adult patient who typically receives care for your myasthenia gravis at the neurology department of Clermont-Ferrand University Hospital in France. Specifically, you must have visited the department for your myasthenia between January 1, 2022, and December 31, 2024.
It's important that you have a confirmed diagnosis of autoimmune myasthenia gravis, which would have been identified through specific blood tests or muscle nerve tests. Your myasthenia should also be classified as being in MGFA class I, II, III, or IV. These classes describe how severe your myasthenia is, ranging from mild eye symptoms (class I) to more widespread muscle weakness (class IV).
There are a few reasons why you might not be able to join. For example, if you are under legal guardianship, like having a court-appointed guardian, or if you don't speak French, you wouldn't be able to participate. Also, if you simply decide you don't want to take part in the study, that's perfectly fine, and you wouldn't be included.
Could this study suit you?
Answer these quick questions to see if you may be eligible. This is a guide only — the research team makes the final call.
- Are you an adult (18 years or older)?
- Do you receive care for your myasthenia gravis at Clermont-Ferrand University Hospital?
- Do you have a confirmed diagnosis of autoimmune myasthenia gravis?
- Do you speak French?
- Are you willing to complete questionnaires?
What does participation involve?
If you decide to take part in this study, the main thing you would do is complete a series of questionnaires. These questionnaires are usually sent out before your regular hospital appointments and you can fill them out either online (via a link) or on paper. When you come for your appointment, the medical team will collect any paper forms you've completed. The questionnaires ask questions about how myasthenia affects your daily life, your overall well-being, and different aspects of feeling tired. You won't be given any new treatments or asked to make extra visits solely for the study. The researchers will also review information from your existing medical records, which is a standard part of your ongoing care. This study uses information that is already part of your usual check-ups, so there's no additional duration beyond your routine follow-up.
Potential risks and benefits
Locations (1)
- CHU Clermont-FerrandVerified postcodeClermont-Ferrand, France
Common questions
What is the main goal of this study?
The study aims to understand how common and disruptive fatigue (tiredness) is for people with myasthenia gravis.
Will I have to take new medicine?
No, this study does not involve any new medicines or treatments. It's about collecting information.
How will the researchers collect information from me?
You'll be asked to fill out questionnaires, either online or on paper. They will also look at your existing medical records.
Do I need to make extra hospital visits?
No, your participation will fit in with your regular hospital appointments and follow-up care.
What if I change my mind after joining?
You can withdraw from the study at any time without it affecting your medical care.
How to find out more
Always speak to your GP or specialist before deciding to take part in a study.
Interested in taking part?
Discussion
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