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App helps patients with MS learn their clinical phenotype

By Jeff Craven

About one in five patients with multiple sclerosis don’t know their clinical phenotype – information that may help inform long-term treatment options for their disease, according to research presented at the 2020 virtual annual meeting of the Consortium of Multiple Sclerosis Centers.

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The study investigators assessed how much patients with MS knew about their disease, explained Michelle T. Fabian, MD, study author and attending physician at Corinne Goldsmith Dickinson Center for MS and director of the neurology residency program at the Icahn School of Medicine at Mount Sinai, New York.

“The question is, what do patients understand about their condition? I think as MS specialists, we have a very set idea of what MS is and what MS is for different people,” Dr. Fabian said in an interview.

In the study, 3,765 patients using the app filled in information on their clinical phenotype, with 744 patients (19.7%) indicating they were unsure about their clinical phenotype.

Patients can have different treatment options depending on whether they have relapsing or progressive forms of MS, Dr. Fabian said, but not everyone is aware of their clinical phenotype.

Researchers from the Multiple Sclerosis Association of America and medical technology company @Point of Care collaborated to enhance MSAA’s “My MS Manager” app for patients to include information on clinical phenotypes in MS. The teams published educational videos within the app and offered patients a field to enter their clinical phenotype.

Dr. Fabian, who appeared in and helped produce the educational videos, said the purpose was to teach patients the basics of MS – a disease that combines inflammation with neurodegeneration – and explain the difference between clinical phenotypes and how those phenotypes were created.

For example, in patients with relapsing remitting MS, “as far as we know, it’s virtually all inflammation, compared with primary progressive MS,” she said. The app’s tools emphasize that different treatment options are available depending on whether a patient had primary progressive or relapsing remitting MS.

In the study, 3,765 patients using the app filled in information on their clinical phenotype, with 744 patients (19.7%) indicating they were unsure about their clinical phenotype.

Those who said they didn’t know their phenotype tended to be younger. While Dr. Fabian said she was surprised by this finding, she added that patients with MS may feel overwhelmed with information during a new MS diagnosis.

“I think that the longer that you have MS, the more you understand it,” she said. That understanding comes from managing MS through experiences such as imaging tests, and assessing symptoms that are fluctuating but not new. “They just understand more, and that’s probably why a person who’s older is more likely to tell you [their phenotype], because they just have had time to understand what this means.”

Of 55 patients using the app who had primary progressive MS, about one-fourth were not using a Food and Drug Administration–approved therapy for MS, and they also were not enrolled in a clinical trial for primary progressive MS.

The researchers suggested that better-informed patients may be open to therapies specific to their phenotype and could also be more likely to enroll in clinical trials for their specific disease.

Dr. Fabian said that there can be a knowledge gap between doctors and patients: The physician is an expert on the disease, while a patient may be coming to the diagnosis without any knowledge at all.

“I think as doctors, we don’t realize that many of our patients are going onto these treatments, and they don’t know why,” she said. “They don’t know what they’re supposed to do.

“Down the road, that is going to set them up for a lot of challenges,” Dr. Fabian cautioned. “It may decrease their adherence, and it may increase their chance that they may be lost to follow-up. Whereas, if they understand the condition and they understand why they’re on the treatment, they’re much more likely to continue the treatment and have as good of an outcome as they can have.”

Physicians treating MS should strive to make sure a patient understands MS, what treatment options are available, and what the treatments can and cannot do, Dr. Fabian said. “As an MS doctor, so much of it is about just educating people, because they don’t hear it. It’s not because they don’t want to, or they’re not smart. It’s just a lot for them to take in. You just keep reiterating and reemphasizing. And over time, they get it. It’s a process.”

The study authors reported no relevant conflicts of interest, and the study received no outside funding.