Finding Time for Multiple Sclerosis's Cognitive Problems

John DeLuca, PhD, senior vice president for research, Kessler Foundation

John DeLuca, PhD

In 2018, the National Multiple Sclerosis (MS) Society published guidelines recommending the optimal approaches to the screening, monitoring, and treating of cognitive issues in patients with MS, and to propose strategies to address the remaining barriers to care.¹

Despite clinicians understanding the need for standardized care in this complex disease and the presence of cognitive problems which can accompany it, there was a longstanding need for improved methods of assessing them. John DeLuca, PhD, senior vice president for research, Kessler Foundation, told NeurologyLive that two-thirds of patients with MS will have some degree of cognitive impairment, which he called a “big difference from 25 years ago,” when neurologists were unsure that cognitive problems even occurred in the disease.

To find out more about what the remaining needs are in addressing the cognitive symptoms of MS and what the guidelines recommend for the clinicians, DeLuca provided insight in an interview.

NeurologyLive: Are there any major needs regarding cognitive problems for patients with MS?

John DeLuca, PhD: There was a paper that was just published in 2018 in the Multiple Sclerosis Journal and it was a guideline from the National Multiple Sclerosis Society for standard of care in persons with MS cognition problems. One of the first guidelines that this paper talks about is education.

Neurologists, healthcare providers, patients, and families need education about cognition and cognitive problems. There are too many questions that go unanswered, and so all the healthcare professionals need to really be up to date on what the issues are with cognition. We know a lot about this, but there's not enough being done in the clinic about it. We know that all the neurologists and all the health care providers are pushed to the max with everything they need to do, but cognition is top of the list for the patients.

What do these guidelines advise?

These guidelines say that individuals, even at diagnosis, need to be tested objectively and these guidelines talk about how there needs to be at least 1 assessment every year. The idea is that, just like you would track perhaps your patient with an MRI every year (or periodically), there needs to be at least a screening of objective testing annually. Then, of course, just like one would have a relapse, you might want to have another MRI if there's something that happens in the patient's life. If they lose their job or something happens, the suggestion is to then repeat the cognitive screening at that point.

If the cognitive screening shows change over time and we can identify what clinically meaningful change is, then that's where a referral needs to be made for a proper, larger assessment by a neuropsychologist. That's because you really want to know the nature of the problems because they can be very different from the patient's complaints. The patients may say, “I really can't remember things anymore, my memory is just gone,” but the problem may not be a memory problem in the sense that they're not able to learn new information. If the problem, for example, is slow processing speed, it may be that during the course of a conversation or a lecture or when there's a lot of noise, they're not learning the information to begin with. If you don't learn it, there's nothing to remember, so the patients might say “my memory is going,” but it may be that they're not learning because the processing speed is the issue.

The neuropsychological evaluation can tease out the nature of the problem, and unless you know the nature of the problem, you can't treat it. The proper rehabilitation or intervention will be based on what the problem is. In my example, if the problem is the processing speed, that's refocused the intervention. If the problem is it's something with executive functioning, that's where you might focus your intervention. You have to have a proper assessment and evaluation. It needs to be done in the clinic, there needs to be the proper follow-up, and it needs to be done according to these guidelines, on an annual basis.

Are there other symptoms or challenges patients with MS face that are often coupled with cognitive issues?

In addition to an annual assessment of cognition, the guidelines also call for an annual assessment of depression because they can go side-by-side. A patient who's depressed might complain a lot about cognition, but the problem may be depression and not cognition. It may be that, if the person has is really having cognitive problems, they may not be depressed and they may be able to work, but they're having problems at work. They may not complain about it so much, but you find that their cognition over the past five years has really decreased because you have these records. This is really the same kind of thing that a neurologist might do using an MRI, but now we need to do that with objective testing to calculate cognitive problems.

What’s the biggest challenge for physicians in addressing these challenges in MS?

From what I hear, it's a lack of time, which I don't find is a good argument. I understand the time pressures that the clinicians have, but if the problems that the patients are having are cognitive, we have to find a time to do the proper assessments. I think it is a huge issue of lack of education and lack of awareness. I think clinicians today, as opposed to 30 years ago, will understand that cognitive problems can be a feature of the disease, but cognition is the highest level of human processing. It is a very complicated thing, it's not a singular construct. There is a lot that goes into it, and you have to really make the proper assessment.

But we do have the tools to look at the major features of cognitive problems and those are what can be used in the clinic. I think the physicians, the clinicians, are not necessarily aware of these instruments, or may not be trained in administration, and how to interpret them. It's not that hard to get the training to do this, this is a matter of making it part of your practice and that's the key right now. These new guidelines are the new standard of practice, and I think the clinicians will have to find a way to fit this in. Maybe it's another session—whatever it might be, it's time that we do this.

Transcript edited for clarity.

REFERENCE

Kalb R, Beier M, Benedict RHB, et al. Recommendations for cognitive screening and management in multiple sclerosis care. Mult Scler J. 2018;24(13):1665-1680. doi: 10.1177/1352458518803785.