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 Multiple Sclerosis Treatment and Research (ECTRIMS) congress, which did not take place in Vienna as originally planned but rather virtually in October 2021. Today I want to give you a brief overview of an ECTRIMS 2021 patient perspective session in multiple sclerosis (MS).
Most of our data on MS comes from clinical trials and has been acquired by neurological examination and MRI. What this ECTRIMS session has highlighted is that there are various other ways of acquiring such data, some of which may be more reflective of the patient’s experience of the disease and in turn be more informative to us than our own. typical clinical trial metrics.
The patient perspective session included presentations from a variety of researchers from around the world. I will tell you about one of my own projects in a moment, but there were also colleagues from Spain, the Netherlands and elsewhere. Here are some highlights from the session.
Barcelona benchmark risk score
Mar Tintoré data presented of the Barcelona group on the use of predictive models of disability that take into account what she called “a multidimensional 360 ° approach”. These models combine the usual measures of disability, MRI information, lesion topography (which was really key to the Barcelona approach) and patient-reported outcomes (PRO) examining quality of life and other measures. , which are captured on an iPad.
His group found that different disease trajectories were established based on predictors in this model – again, including lesion topography, such as location in the brainstem and spinal cord.
Identifying patients at earlier and higher risk using this multimodal disability assessment tool would allow for a much more personalized approach. I think that by looking at the predictors of disease trajectory using an in-depth approach to disability assessment, the Barcelona group is probably offering the future of how we are going to proceed in our field.
The best ways to get PROs in your practice
In another presentation, Patricia Coyle of Stony Brook University in New York City discussed how truly patient-centered medicine in MS needs to incorporate elements such as patient opinion, activity metrics, and benefits. These are going to be essential for understanding the impact of the disease in an individual way, which will serve as a guide for all of us in practice.
There have been studies of OWP surveys, both generic and MS specific, that you may consider using in your practice. Patients can complete these surveys before their visits, in the waiting room, or after visits, and then you can enter this data into your electronic medical record.
Screening for cognitive dysfunctions using a rapid screening tool like the Symbol Digit Modalities Test gives us a more detailed view of cognition than what we get from a simple mental state exam. As Dr. Coyle said in his presentation, PROs are truly an essential part of the American Academy of Neurology’s quality outcome measures for the care of MS, including bladder, bowel, and sexual dysfunction. , fatigue and other things that patients need to tell us about.
There are also many smartphone apps available that could be used to capture some of this data. A presentation, by Ka Hoo Lam from Amsterdam, reviewed a smartphone app to capture things like cognitive dysfunction and even gait. This allows for a higher measurement frequency and more detailed measurements than what we can simply achieve in the office.
Reconsider a common threshold for the “normal” neurological system
Finally, speaking on behalf of Mount Sinai, I made a presentation on finding a disease burden below the Expanded Disability Status Scale (EDSS) threshold of 0. Every disease in neurology has its rating scale, and in MS we use EDSS. Over the past 40 years, an EDSS of 0 has been defined as neurologically normal.
We examined a patient population with an EDSS of 0 and compared them to healthy controls. Of course, if an EDSS of 0 is truly normal, then this population should be identical to healthy controls of the same age. We have studied them using tasks of balance, coordination, and cognitive function that are much more difficult than what we would typically do in clinical practice.
What we found, perhaps unsurprisingly, that patients with an EDSS of 0, which we considered normal all these years, had deficits in balance, strength, cognitive function, and coordination. upper limbs. They weren’t normal.
The problem is, in our typical neuro exam, we don’t look closely enough and we don’t look below the surface to see a more subtle burden of disease.
Over the past few years, I have presented the topographic model of MS. This project on EDSS 0 is part of this same initiative. He attempts to look below the clinical threshold and glimpse the disease burden below, which may have important prognostic implications.
Do what we can to get the patient perspective
Summing up this session at ECTRIMS 2021, I would say that while we can’t all use incredibly time-consuming PROs or difficult tasks in our practices, we could use some of them. And we could choose wisely ways to look more closely at our MS patients in our clinical practices. This would allow us to have a more 360 ° view, as Dr Tintoré said, and look below the typical clinical threshold to see things that we might have otherwise missed.
I’m Stephen Krieger from Mount Sinai reporting for Medscape.