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Updates in the Management of Myasthenia Gravis Peers and Perspectives - Episode 3

Goals of Therapy and Patient Communication

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Thought leaders offer practical advice on setting therapy goals for patients with myasthenia gravis, with an emphasis on patient inclusion.

Dr. James F. Howard: As you treat patients, what's the ultimate goal?

Dr. Nicholas J. Silvestri: Really for me, I push the envelope. I've been aggressive about this for a long time, and I really want to get patients symptom-free or as close as symptom-free as I can safely get them. And then the flip side of that is I want them to tolerate their therapies. I want them to have few or even ideally no side effects on their therapy. Basically, I want to make their disease go away and let them know they have the disease by either the symptoms or side effects of therapy.

Dr. James F. Howard: And I would agree with 100%. There's some controversy in the recent international myasthenia conference, was held and there was discussion about this topic. And there was a segment who said, as long as they feel OK, regardless of how weak they are, that's their endpoint. And my concern is that as patients have a chronic disease, particularly one that is insidiously evolved, they reset what normal is, and they don't know what normal is until they're better. And then they look back and say, oh my goodness, I didn't know this. Or I gave up golf because I thought I was getting old and now I can swing a club just as well. And so, that's a concern I have is that we give up. We, the community sometimes give up too quickly in part, because the patient is accepting of what they have, their limitations. Not realizing that there may be - and it's not for everybody, but there may be a better life if we are more aggressive.

Dr. Nicholas J. Silvestri: Yeah, I couldn't agree with you more. As you know, there was a paper co-authored by the late Nancy Law and some of other patients and advocacy groups that really talked about the patient's perspective of treatment for myasthenia. And one of the topics that the authors brought up was this idea of what you're talking about, which is treatment inertia either on the part of the clinicians not really wanting to push a little bit more aggressively, and sometimes there may be good reasons for that. Other times, not. And sometimes on the part of the patient; to speak to your point that patients don't know that there might be a way to get even better. I think that approach certainly has to be individualized. Maybe I'm not as aggressive with more frail or otherwise medically ill patient, because I'm worried about potential side effects or tolerability issues, or quality of life with therapies. But I think that really is the exception rather than the rule. I think we need to be aggressive in treating our patients. And I think that one of the joys of treating people with myasthenia as contrasted with a lot of the other neuromuscular disorders that we treat is that we can actually make a meaningful impact. And so, improvement is great, but minimal manifestation status or minimal symptom expression, I think really should be the aspiration.

Dr. James F. Howard: And just to elaborate that for those who may not know, there are several outcome measures that we routinely use in following our patients with myasthenia gravis. One is an activity of daily living score composed of eight items that we query the patient in a very structured fashion and minimal symptom expression, or those individuals who have a score of zero or one, which essentially means no disease. And minimal manifestation is a state in which the treating physician believes there's no functional weakness and there's no symptoms. And these are our targets that we now shoot for particularly with our newer therapies that are coming online, where we can more easily achieve this. What role does the patient have in determining their therapy?

Dr. Nicholas J. Silvestri: I would say in my practice, they have a pretty prominent role. But again, I think it varies by patient by patient, right? I have some patients who they want to be the directors of their therapy. And sometimes I think that their recommendations or their requests are very reasonable. And I'm fine with that. There are times where it's, I don't think reasonable and we have to talk through why that's the case and what other therapies might be a better option. And there are some patients and not to be ages, but just as a general observation, tend to be older, who tell me, you're the doc, just tell me what you want me to do, and I'm going to do it. And so, I try to really gauge each patient; see how involved or how uninvolved they want to be with these decisions. But certainly, I view it as a team effort between the patients and oftentimes their families and I, in terms of what we do going forward in their therapy.

Dr. James F. Howard: Yeah. And I can't agree more. The patient needs to be their advocate, particularly in healthcare situations where their treating neurologist is not available or they're traveling, whatever. And so, they need to know their disease and we spend a lot of time educating them on their disease and on their medications and why we've done what we've done. And then they in turn can be their advocate in those situations where we're not readily available, so to speak.

Transcript Edited for Clarity