Looking Beyond the Typical Measures of MS Diagnosis

Stephen Krieger, MD


November 10, 2021

This transcript has been edited for clarity.

Hi. I'm Stephen Krieger from Mount Sinai in New York, here with an update from the European Committee for Treatment and Research in Multiple Sclerosis (ECTRIMS) congress, which was not held in Vienna as originally planned but rather virtually in October 2021. Today I want to give you a brief overview of an ECTRIMS 2021 session on patients' perspective in multiple sclerosis (MS).

Most of our data in MS come from clinical trials and have been acquired through neurologic exam and MRI. What this ECTRIMS session pointed out is that there are various other ways of acquiring such data, some of which may reflect more of the patient experience of disease and in turn be more instructive for us than our typical clinical trial metrics alone.

The patients' perspective session included presentations from a variety of researchers around the world. I'll tell you about one of my own projects in a moment, but there were also colleagues presenting from Spain, the Netherlands, and elsewhere. Here are a few highlights from the session.

Barcelona Baseline Risk Score

Mar Tintoré presented data from the Barcelona group on the use of predictive models for disability that take into account what she called "a 360° multidimensional approach." These models combine the usual metrics of disability, MRI information, lesion topography (which has really been essential to the Barcelona approach), and patient-reported outcomes (PROs) looking at quality of life and other measures, which are captured on an iPad.

Her group found that different disease trajectories were established on the basis of predictive factors in this model — again, including lesion topography, such as location in the brain stem and the spinal cord.

Identifying the patients at an earlier and higher risk using this multimodality disability assessment tool would allow for a much more personalized approach. I think that by looking at disease trajectory predictors using a thorough approach to assessing disability, the Barcelona group is probably offering the future of how we'll be doing this in our field.

The Best Ways to Obtains PROs in Your Practice

In another presentation, Patricia Coyle from Stony Brook University in New York talked about how truly patient-centric medicine in MS has to incorporate things like patient opinion, activity measures, and PROs. These are going to be essential to understanding the impact of the disease in an individual way, which will act as a guide for all of us in practice.

There have been studies looking at surveys of PROs, both generic and specific to MS, which you may want to consider using in your practice. Patients can fill out these surveys before their visits, in the waiting room, or after the visits, and then you can enter that data into your electronic medical record.

Screening for cognitive dysfunction with a rapid screener like the Symbol Digit Modalities Test gives us a more detailed view of cognition than what we get from just a simple mental status exam. As Dr Coyle said in her presentation, PROs are really an essential part of the American Academy of Neurology's quality outcomes metrics for MS care, including bladder, bowel, and sexual dysfunction, fatigue, and other things patients need to tell us about.

There are also a lot of smartphone apps available that could be utilized to capture some of this data. One presentation, by Ka Hoo Lam from Amsterdam, looked at a smartphone app to capture things like cognitive dysfunction and even gait. This allows for higher frequency of measurements and more detailed measurements than what we can achieve just in the office.

Reconsidering a Common Threshold for Neurologically 'Normal'

Finally, speaking on behalf of Mount Sinai, I gave a presentation on looking for subthreshold burden of disease at the Expanded Disability Status Scale (EDSS) of 0. Every disease in neurology has its assessment scale, and in MS we use the EDSS. For the past 40 years, an EDSS of 0 has been defined as neurologically normal.

We looked at a population of patients with an EDSS of 0 and compared them with healthy controls. Of course, if an EDSS of 0 is truly normal, then this population should be identical to age-matched healthy controls. We studied them using much more challenging tasks of balance, coordination, and cognitive function than what we would typically do in clinical practice.

What we found was, perhaps unsurprisingly, patients with an EDSS of 0, which we've thought of as normal all these years, had deficits in balance, strength, cognitive function, and upper extremity coordination. They were not normal.

The problem is that in our typical neuro exam, we don't look hard enough and we're not looking below the surface to see a more subtle burden of disease.

Over the past several years, I've presented the topographical model of MS. This project looking at the EDSS of 0 is part of that same initiative. It attempts to peer below the clinical threshold and glimpse the burden of disease beneath it, which may have important prognostic implications.

Doing What We Can to Get Patients' Perspectives

In summarizing this session at ECTRIMS 2021, I'd say that although we can't all use incredibly time-consuming PROs or challenging tasks in our practices, we could use some of them. And we could pick and choose judiciously some ways of looking more carefully at our MS patients in our clinical practices. That would allow us to get more of a 360° view, as Dr Tintoré said, and to look below the typical clinical threshold to see things that we might have otherwise been missing.

I'm Stephen Krieger from Mount Sinai, reporting for Medscape.

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