Nearly 15% of MS patients declined cognitive testing in new study

Nearly 15% of people with multiple sclerosis (MS) declined free cognitive testing offered at a specialized clinic in Canada, a new study found. Those with progressive MS, anxiety-related disorders, or no reported concerns about their thinking and memory were more likely to decline testing. This could leave cognitive difficulties undetected and contribute to gaps in care.

These findings support “the need to implement strategies to expand access to neurocognitive testing in people with progressive MS and anxiety-related disorders,” researchers wrote.

The study, “Who declines neurocognitive testing? A cross-sectional study in people with multiple sclerosis,” was published in the Multiple Sclerosis Journal.

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Cognitive difficulties can affect daily life with MS

MS can affect thinking skills, including memory, attention, and the ability to plan and organize activities. These difficulties can interfere with daily activities and reduce quality of life.

Clinical guidelines recommend access to cognitive screening for people with MS to help identify difficulties early and guide care. However, previous studies have tended to include more people with relapsing-remitting MS (RRMS) and milder disabilities. People with progressive MS or more advanced disabilities are often underrepresented in these studies.

Researchers wanted to know whether patients’ decisions about cognitive testing might help explain this pattern. They reviewed medical records from 334 adults with MS who attended a specialized neuropsychiatry clinic in Ontario, Canada. Their mean age was 44.1 years, and 69.8% were women.

Among the 332 participants with available information on MS subtype, 79.8% had RRMS, 11.7% had primary progressive MS, and 8.4% had secondary progressive MS. Overall, 81.4% were referred for cognitive testing, 14.7% declined, and 3.9% were considered ineligible, most often because they were not sufficiently fluent in English for the available tests.

In initial analyses, people who declined cognitive testing were older on average (47.2 vs. 43.5 years) and had greater physical disability than those referred for testing. They were also more likely to have progressive MS (34.7% vs. 17.8%) or an anxiety-related disorder (42.9% vs. 23.9%). However, they were less likely to report concerns about their thinking and memory (64.6% vs. 87.8%).

Progressive MS and anxiety-related disorders linked to declining testing

After adjusting for multiple factors, researchers identified three characteristics independently associated with declining cognitive testing. People with progressive MS had about twice the odds of declining testing compared with those with RRMS, while those with an anxiety-related disorder had 2.5 times the odds of declining testing as those without such a diagnosis. People who did not report cognitive concerns were also significantly more likely to decline testing than those who did.

Researchers suggested that people with progressive MS may face additional challenges attending medical appointments. They may also worry about what cognitive testing could reveal or how the results might affect their daily lives.

People who do not report cognitive concerns may see little benefit in testing, even though their perceptions may not reflect their actual cognitive abilities. The researchers noted that a previous study found about 40% of people with MS who reported few cognitive concerns showed cognitive impairment on testing.

The association with anxiety-related disorders may also indicate concerns about receiving negative test results.

People with progressive MS and greater disability already face a higher risk of cognitive problems. The findings suggest they may miss out on needed care if they decline cognitive testing.

The researchers noted several study limitations. Participants came from a single specialized neuropsychiatry clinic and had already been referred for evaluation. The observational study also could identify associations but could not establish causation.

Despite these limitations, the findings suggest “that those with progressive MS or anxiety-related disorders and [people with MS] without cognitive concerns are more likely to decline neurocognitive testing,” the researchers wrote.

The researchers also called for further studies to “understand the factors that contribute to decisions to decline neurocognitive testing.”