Multiple Sclerosis Disease Burden and Patient Impact


Experts in neurology provide insight into the impact multiple sclerosis can have on patients and hypothesize about initiating treatment before cognitive impairment is observed.

Ahmed Obeidat, MD, PhD: Sometimes in the clinic, when people come to us, they always describe how this is affecting their life. To your point, you mentioned something about work issues. If they’re having difficulty at work, multitasking comes up a lot in the clinic, in my clinic, at least they say, “I’m having difficulty multitasking”. And I often ask, I say, “Well, what’s been your most recent evaluation at work?” If they’re employed. And then, I ask, “Are you needing longer time to finish the task that you have?” And this is sometimes for me an indicator where I’m like, “I need to do something more. It’s now starting to affect their daily life, it is starting to affect their work”, but I’m thinking like, “Should I start this even before it even affects anything? And how do I screen for it really in a good way?”

Randall Schapiro, MD, FAAN: There are screening tests that we’ve already talked about, the symbol digit modalities test [SDMT] and the paced auditory serial addition test [PASAT] numbers. But I think talking to the persons is the way you start, and talking to the family and getting a feeling like you said, “Are they having trouble at work? Are they having trouble with sleep? Are they having trouble functioning?” When I explain cognitive problems to my patients and to the students, I try to get them to understand that if I were to ask them, “How do you drive to Milwaukee, Wisconsin from Minneapolis?” The first thing is they’d have to have seen it and stored it in their brain. If they’re going to tell me about it. Thus, they store it somewhere in the temporal lobes, but that’s not telling me. To tell me, they have to retrieve it from the temporal lobe and move it to the area of speech that formulates language. We call it the Wernicke area. And then, they move it from the Wernicke area and now they know what they want to say, but they’re not saying it. In order to say it, they have to move it from the Wernicke area to the front of the brain, to Broca’s area. And when they move it to Broca’s area, then they have to get their mouth working. And that comes from the top of the brain, and all of that are heavily marinated tracks that are going to be affected to some degree in multiple sclerosis. And hence, they short circuit and you get trouble with retrieval, you get trouble with thinking and organizing and planning and foresight and judgment and all of those types of things.

Ahmed Obeidat, MD, PhD: Thus, all of the network.

Randall Schapiro, MD, FAAN: Hence, it’s no wonder that it’s so common and so difficult.

Jeffrey Wilken, PhD: And as far as screens are concerned, as I said, and as Dr Schapiro said, there’s no substitute for talking to the patient, but the neurologists have been asking, and they want a screen. They want a screen. We started out early in our research doing a lot of computerized screening work. We thought this will be the answer. It’s still too long. They don’t have the time to do it. It still takes 15 minutes. The PASAT, as we heard from Dr Schapiro, is a miserable test that makes people—

Randall Schapiro, MD, FAAN: I hate it.

Ahmed Obeidat, MD, PhD: I administer—it’s a problem.

Jeffrey Wilken, PhD: It doesn’t just make the patient cry. It makes it’s a very hard test. And what we have found out about that test, it’s the paced auditory serial edition test, or the PASAT. What we have found out about that test is it has terrible reliability. It’s not really very valid. You take it enough times. You start to do better just because you don’t hate it as much because you get used to it. The SDMT is a 90-second test. It takes very little time. It’s something that can be done in a neurologist office. And a lot of them are starting to realize it’s not very resource consuming. Thus, to your question, I think that’s really where the screening in a neurologist office is going right now. The problem with it is it doesn’t reflect all of cognition and sometimes neurologists or researchers will talk about it as this is the cognitive endpoint. No, it’s like I said before—

Ahmed Obeidat, MD, PhD: It’s a screening test.

Jeffrey Wilken, PhD: But we are starting to see this, and a certain number of points decline is meaningful. It’s meaningful in terms of quality of life, meaningful in terms of work ability, in terms of the ability to function in the workplace, it was 4 points it was thought a change. But my neuropsychology colleagues these days are starting to realize that when you really look at that literature closely, it’s probably a little more than 4-point drop that is meaningful. And I’d want to see almost like you see with the EDSS [Expanded Disability Status Scale] where you’re looking for a sustained decline. You want to see a sustained decline because what if a person just had a bad day, they came in office—

Ahmed Obeidat, MD, PhD: That’s exactly right.

Jeffrey Wilken, PhD: And then, see them again in a month and see if there’s still a decline. That kind of thing.

Randall Schapiro, MD, FAAN: We really have to be careful though. Because you don’t want that patient to think that they’re coming to your office and being grilled and that this is going to be a bad experience and that they’re going to be depressed leaving the office. You want them leaving the office feeling better than maybe they came in. That’s the goal.

Ahmed Obeidat, MD, PhD: The healing power.

Randall Schapiro, MD, FAAN: Thus, you have to balance that person with the testing and that’s really difficult with cognition, a time to walk. It’s not such a big deal. They look at that and they don’t think that their ego is involved in that necessarily unless they’re an athlete, then they do.

Jeffrey Wilken, PhD: You’re right. That is the problem with a lot of neuropsychology testing. The one nice thing about the SDMT is it seems so easy.

Randall Schapiro, MD, FAAN: It’s easy.

Jeffrey Wilken, PhD: And it really actually is very easy. And if you’re just marking down a number, the patient may not even really know the score you just, the nurse or whoever’s going to administer the doc, marked down a number, and put it in the chart. It doesn’t feel as bad. And the PASATs are going to end up people going.

Randall Schapiro, MD, FAAN: It does. It absolutely does.

Ahmed Obeidat, MD, PhD: Then, we agree on the SDMT maybe as a screening test.

Transcript Edited for Clarity

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