Debunking gMG Myths: Counseling Strategies That Change the Conversation

Announcer:
This is NeuroFrontiers on ReachMD. On this episode, we’ll discuss how we can optimize patient counseling in generalized myasthenia gravis care with Dr. Maxwell Levy. He’s an Assistant Professor of Neurology and the Residency Program Director at Tulane University in Louisiana. Let’s hear from Dr. Levy now.

Dr. Levy:
One of the most common misconceptions that I hear from patients has to do with the severity of disease and their general trend over time, especially early on in the course of their gMG. Patients are concerned that it’s always going to be as bad as it is. Oftentimes, myasthenia is most severe in the first year or so, and over time, we’re able to decrease their day-to-day weakness as well as the frequency of their exacerbations and crises. Once patients get a sense of this, it does offer them some relief that the variability in this condition is both one of the most frustrating features of it as well as one of the most promising features for them. It shows that their body has the ability to be strong again. They have the ability to be well or at least to be less unwell.

The other major gap that I think is critical to talk to patients about is exercise. Working with physical therapists can induce fatigue in certain muscles or in the overall body, and that can be challenging to work with, but even in patients who are uninjured, getting good exercise is important. Especially with the prominent use of prednisone, which is obesity promoting, it’s further critical to make sure that patients are able to move around.

In tailoring your counseling approach to address these gaps, it’s important to account for differences in patient goals, health literacy, and emotional readiness. For many patients, understanding the pathophysiology of the disease and the treatment of their disease is both enlightening and helpful for patients. It allows them to have a better knowledge of what’s going on. It allows them to understand why things are working, why things aren’t working, why this is different than that, and why now is different than then.

Regardless of patients’ level of medical literacy, metaphors and gradually building explanations from the basics in plain language can be very effective. When it’s broken down into its basic pieces, patients can understand that nerves transmit signals from the brain, they release a chemical that’s picked up by the muscles, the muscles contract, they produce strength, the body has an ability to fight off foreign invaders, and it produces antibodies to target them. Antibodies can be mistargeted, and they can be targeted at muscle. Targeting them at some of the receivers on the muscle prevents the nerves from getting their signal to the muscle. Giving them medications to decrease the amount of antibodies and other immune response or increase the amount of signal transmitted is something that patients can very easily understand, and they can easily understand that this is not a consistent process. Sometimes it’s more severe, sometimes it’s less severe, and treatments and environmental and body health conditions can affect it. None of these, on their fundamental levels, are things that patients are unable to absorb and comprehend, but when patients are knowledgeable about what’s going on, that helps them engage further and be more active in their treatment and more successful in their treatment. 

Announcer:
That was Dr. Maxwell Levy sharing best practices for counseling patients with generalized myasthenia gravis. To access this and other episodes in our series, visit NeuroFrontiers on ReachMD.com, where you can Be Part of the Knowledge. Thanks for listening!