App helps patients with MS learn their clinical phenotype
By Jeff Craven
“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.
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.
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.
“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.”
The study authors reported no relevant conflicts of interest, and the study received no outside funding.