Living with multiple sclerosis (MS) can be frustrating in more ways than can fit into this post. From being misunderstood by family and friends, to having doctors contradict what we know to be going on inside our own bodies, to being labeled by just a sliver of what we experience, and a myriad of others, the experiences can leave us much aggrieved.
We’re not the only ones in the MS-sphere who can get frustrated with that one-dimensional labeling bit. Researchers are finding themselves increasingly stymied by singular outcome measures as they try to treat our disease.
EDSS Is But One Way of Measuring MS Progression
Many of us will be familiar with the EDSS (Expanded Disability Status Scale) method of evaluating our disease based on ambulation (walking). But what does our ability to walk (or walk quickly) have to do with cognition, fine motor skills, or any of the long list of difficulties we may encounter on our MS journey?
The answer is “not much,” but it is one swath of the broadcloth of this disease.
There are other outcome measures, and now it has been reported that using several of these methods of evaluating a person’s MS in concert can give a better overall view of not only the disease progression, but also how developing treatments might help curb that progression.
Researchers Find 4 Tests Work Better Than Just One
In a paper published October 22, 2019, in Neurology, researchers evaluated components of a multidimensional test battery recommended by the Multiple Sclerosis Outcome Assessments Consortium (MSOAC). The research validated the concept that a four-pronged assessment led to better overall detection and plotting of MS progress.
The four tests include:
- A timed 25-foot walk for ambulation assessment
- Low-contrast letter acuity to quantify vision
- The Symbol Digit Modalities Test to evaluate cognition
- The Nine-Hole Peg Test for manual dexterity and fine motor skills
Having their opinions validated, MSOAC has submitted application to the U.S. Food and Drug Adminstration (FDA) and European Medicines Agency (EMA) for regulatory approval of these measures as the new benchmarks for MS treatment testing. If this set of tools is approved for use as a primary outcome measure in clinical trials, it will be made freely available to investigators.
Multiple sclerosis affects many people in many ways. It’s nice to see that researchers are beginning to see what we’ve known for a long time: You can’t judge us equally with just one test.
Wishing you and your family the best of health.
Cheers,
Trevis
