Barriers to Timely Diagnosis of Generalized Myasthenia Gravis: Marla Black Morgan, MD

In a recent interview with The American Journal of Managed Care^®, Marla Black Morgan, MD, neurologist with Phoebe Neurology Associates, discussed the findings from her investigation into the diagnostic journeys of patients with rare neuromuscular conditions. She presented findings from her Project ASPIRE (eliminAte diSparities and Promote equIty in Rare diseasE) at the recent American Academy of Neurology annual meeting.

Through part 1 of this discussion, she delved into the health care challenges of racial and ethnic minority patients who have generalized myasthenia gravis (MG), and in this part 2, she goes into greater detail of the barriers to timely diagnosis that these patients continue to encounter.

This transcript has been edited for clarity; captions were auto-generated.

Transcript

Outside of a clinical setting, how do the experiences of racial and ethnic minority patients living with MG differ from other patient populations?

I think it is highlighted—and it is highlighted, particularly in the rare disease space—I think that you may see less of a difference in more commonly seen disorders, just because more practitioners may make that diagnosis, say for Parkinson disease as compared to generalized myasthenia gravis. My own gestalt is, though, there's still that difference, and we try to employ strategies across the spectrum to try to lessen that timeframe. I think, though, that in rare diseases, you will find things are magnified in terms of those differences, particularly in time of diagnosis.

In your ASPIRE project analysis, can you discuss the barriers to timely diagnosis that you saw?

The number 1 item that patients rendered as a delay or a hindrance to diagnosis was actually recognition of their symptoms as a part of generalized myasthenia. That was both from a patient perspective, that, “Hey, I may have arm and leg weakness, I don't realize that that may be a neurological disorder.” The same thing was true, though, if you look at the data in terms of doctor or physician recognition of their symptoms as a part of myasthenia gravis—that was a major factor. That's probably the number one thing that they mentioned.

Actually, difficulty accessing care and access issues, whether you're talking about logistics of getting from point A to a physician's office or having the coverage for the diagnostic tests that could actually confirm the diagnosis, those were also issues as well. The patients also highlighted some issues in terms of trying to tease out the symptoms to say this is myasthenia vs some other disorder as being a part of it.

What, from a physician standpoint, we saw across the board, is they thought that the major barrier was education and recognition of symptoms, but it became highlighted when we said, “Okay, what can we do about this problem? What strategies can we employ to try to help that?” Again, education was number 1 in both groups, but access issues, whether, like I said, we're talking about logistical issues, having time off, having coverage, insurance wise, having access to a subspecialist—because some of these patients even saw general neurologists who did not make that diagnosis, and they required subspecialty care before the diagnosis was made. Those were all things that came up.

Some of the patient strategies that were recommended even came into play in terms of access issues. One thing that was surprising that really didn't come to top of mind when we're talking about struggles and barriers to diagnosis, patients mentioned over and over, actually, physician access to previous medical records, that they found a lot of duplication of effort that, “Hey, I'm not able to get the testing that was performed by a different physician for whatever reason.” Having to duplicate those pieces of testing and information, that also caused some delays, and that really didn't come up to top of mind, especially since we have EMRs [electronic medical records], but some of our EMRs don't talk to other EMRs, and so again, trying to get that information can be very helpful.

I know in our practice, we try to have someone who can help you navigate through that process and to sort of serve as a person who checks behind to say if we needed to get these records or you needed to get this testing, can we make sure that you've gone for that lab appointment or have you gone for that electro diagnostic testing, or have we received those results? But is widely different practice to practice, and if you don't have someone who is commonly checking on that or that is their duty, then that information can easily be missed.