CMSC 2026: MS patients often downplay symptoms to their doctors: Survey
Many feel their lived experiences aren't given enough consideration
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A doctor consults with a patient in their office. (Photo by iStock)
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Many MS patients downplay symptoms to doctors, fearing they won't be believed.
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Patient-reported data is often undervalued, especially during initial visits with new providers.
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Integrating patient experiences, self-advocacy, and multidisciplinary care improves chronic MS management.
Subjective, patient-reported data on lived experiences should always be considered in the care of chronic conditions like multiple sclerosis (MS), according to a recent presentation.
In a survey, many people with MS reported feeling that their lived experiences aren’t given enough consideration during visits with their care providers, and that they often downplay symptom severity out of fear they won’t be believed. While this perception was greatest among individuals seeing a new care provider for the first time, it was still common during repeated visits with a familiar provider.
The data were presented in a poster by Multiple Sclerosis News Today columnist Ben Hofmeister at the Consortium of Multiple Sclerosis Centers (CMSC) 2026 annual meeting, which is being held this week in Charlotte, North Carolina. The poster is titled, “Reconsidering the Diagnostic Value of Patient-Reported Subjective Data in the Care and Treatment of Multiple Sclerosis.”
“Considering each patient as an individual with a unique lived experience leads to a better quality of care, better compliance with treatments, and a better learning experience for the provider,” Hofmeister, who is attending the event as a member of the MS committee of the Paralyzed Veterans of America (PVA), wrote in his abstract, which he submitted with the assistance of two fellow committee members and his 13-year-old son.
Evidence has demonstrated value of patient-reported data
Routine MS monitoring involves MRI scans, neurological examinations, and functional tests to track disease activity and progression. Doctors also typically collect patient-reported outcomes on symptoms, daily experiences, and quality of life.
“In a patient encounter, two types of data are normally … recorded,” Hofmeister told Multiple Sclerosis News Today. “There’s “subjective data — what the patient tells the provider in their own words from their own experience — and objective data, [which is] what the provider determines through observation … [and] measurements.”
Accumulating evidence has demonstrated the value of patient-reported data, which can help predict clinical outcomes and empower patients to feel more involved in their own care. But because such data can be biased, it’s often considered less important than more objective tests.
While Hofmeister agrees that subjective input “should never outweigh something measured,” he thinks patient-reported data has an important role to play in chronic disease care.
“In an acute situation, such as a trauma case, like a car wreck, a patient reporting their subjective input might only have a few minutes through a few hours of experience with that injury. But in chronic cases, patients may have years of lived experience,” Hofmeister explained. “So our suggestion … is that the subjective input of the chronic care patient should matter more than subjective input from the acute patient.”
Many patients are afraid they won’t be believed
To learn more, the team spoke with 128 MS patients, online or in person, and gathered their experiences from over 1,000 visits with MS healthcare providers, including specialists and general practitioners.
During first-time visits with specialized care providers, nearly all MS patients (97%) reported that they did not think their subjective input and self-reported experiences with the disease were given the importance they felt they deserved.
Most (89%) said they intentionally underreported their pain levels and other symptoms because they were afraid they would be viewed as overdramatic or that they would not be believed.
In the chronic case, everything should be considered; we shouldn’t be hiding anything or downplaying anything.
These challenges were less prevalent in chronic care scenarios where patients were visiting with a familiar provider, but they were still common. Just under half (42%) of participants reported that they didn’t feel their subjective input was given the consideration it deserved, while 27% reported that they downplayed levels of pain or other symptoms.
“In the chronic case, everything should be considered; we shouldn’t be hiding anything or downplaying anything,” Hofmeister said, noting that self-advocacy as an MS patient is key. “I was never a great self-advocate for myself from the beginning. I became that way because other people advised me, advocated for me … I had to seek out … the right mentors.”
Echoing the overarching goal of CMSC and its annual meeting — which is to improve multidisciplinary care in MS — Hofmeister said that in his experience, a multidisciplinary care approach is another way to ensure the patient voice is heard.
“I see [a neurologist], a neurological pharmacist, social worker, etc.” he said. “My patient experience matters more because more people are … hearing it …, so that might be a possible solution.”
Note: The Multiple Sclerosis News Today team is providing live coverage of the Consortium of MS Centers Annual Meeting, May 27-29. Go here to see the latest stories from the meeting.
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