Largest ever study of cognition in MS reveals group of people whose symptoms are often overlooked

Up to 70% of people with MS experience cognitive problems, like trouble with thinking or memory. But most tests to detect cognitive impairment are time-consuming and expensive, so they’re rarely offered to people with MS.

Currently, the main method of measuring disability is the Expanded Disability Status Scale (EDSS) scale. But the EDSS mostly focuses on the physical impact of MS. That means people could be told their MS is ‘benign’ when in fact they have problems with cognition. Previous research suggested nearly half of people who are told they have benign MS actually have problems with their cognition.

In a new paper published today, researchers published data from the largest study of cognition in people with MS to date. The researchers adapted an existing online assessment called Cognitron for people with MS to detect cognitive impairment in greater detail.

Using this improved assessment tool, they found there's a group of people with MS who experience cognitive problems but very little physical disability. They also found that symptoms in this group often remain unrecognised and people may not receive the support they need.

What did the researchers do?

Researchers developed an adapted version of the existing Cognitron test, called Cognitron-MS, to accurately measure problems with cognition in people with MS. The researchers then recruited over 4,000 people with MS who are part of the UK MS Register to complete the Cognitron-MS test.

Researchers compared this with data from thousands of people without MS who completed the BBC’s Great British Intelligence test. This is an online test designed to measure the intelligence of the British public.

What did the researchers find?

The researchers found that the adapted version of the Cognitron test was accessible for people with MS, and both cost and time efficient.

Looking at different sub-types of MS symptoms, the researchers revealed one particular group who showed cognitive impairment but not much physical disability. This group included people of all ages and types of MS, but particularly younger people who had a recent diagnosis.

What does this mean for people with MS?

Even though many people with MS experience cognitive problems, it’s a symptom that currently isn’t routinely assessed in clinical practice or in clinical trials.

Using an adapted test like Cognitron-MS could help ensure people with cognitive impairment are detected and supported. This is especially important for those who are often overlooked, like people who have no obvious physical disability but do experience cognitive impairment.

And it could also be used in clinical trials to assess whether treatments are working on cognition as well as on physical disability.

Dr Catherine Godbold, our Senior Research Communications Manager, says, “MS symptoms are different for everyone and often invisible. But for too long, cognition has been overlooked and neglected, leaving people to struggle alone without access to the right treatment and services.

“This is the largest study on cognition in MS to date, and Cognitron-MS has the potential to transform how cognitive functioning is tested for people with MS.”