Contributing to better quality of MS care at this year’s CMSC meeting
I submitted an abstract for this year's meeting — and it was accepted
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I am attending the annual meeting of the Consortium of Multiple Sclerosis Centers (CMSC) this week, my second time here. Like my first time, in 2024, I’m going as a member of the multiple sclerosis (MS) committee of the Paralyzed Veterans of America.
Back then, I thought all I would do there was help raise awareness of the services our committee provides to veterans with MS. It’s important to spread the word to providers and researchers, but I was almost overwhelmed by the amount of information and opportunities available to patients. While I’ll be there to represent the MS committee, I’m also going to meet researchers, attend some presentations, and actually contribute a small one myself.
Last fall, CMSC issued a solicitation for abstracts to be considered for presentation and subsequent publication in the International Journal of MS Care. So, with the assistance of two of my fellow committee members and my 13-year-old son, I submitted one.
I never expected it would be considered, but imagine my surprise when “Reconsidering the Diagnostic Value of Patient-Reported Subjective Data In the Care and Treatment of Multiple Sclerosis,” our abstract and a subject I’m particularly passionate about, was accepted as a poster presentation.
We get to present it tonight, May 28, to an international, diverse group of experts in the MS community. I’m still surprised, but now I’m a little intimidated, too.
Subjectively vs. objectively speaking
The abstract’s premise is this: Regardless of the format used to record it, during encounters between a patient and a medical provider, two main types of input are collected. One is subjective information reported by the patient, and the other is objective information collected by the provider through testing or observation. Since they can be measured and quantified, objective data are considered more reliable. Subjective data — which are more likely to be influenced by emotion, personal feeling, and bias — may be viewed by providers with careful consideration or, sometimes, outright skepticism.
Objective data will, and honestly should, outweigh subjective data when it comes to diagnosis. This might be especially true in acute cases, such as a sudden illness or traumatic event, because of their recent nature, when patient input is more likely to be influenced by emotion or personal feelings. But when subjective data are provided by a patient with a chronic condition, such as MS, that input should weigh more in the balance of clinical decisions.
I’m not suggesting subjective data in chronic cases should be of more, or even the same, value as objective data. Patients absolutely rely on the objectivity and expertise of their providers because it’s impossible for patients to be completely objective about their own condition.
But what I am suggesting is that, because of the chronic nature of MS, the patient experience, despite still being subjective, should carry more weight and be considered of higher clinical value than that of patient-reported data in acute cases. Put another way, a patient with a broken arm in the emergency room might be providing data from their brief experience with fractures. A patient with MS is drawing on what might be years of day-to-day lived experience, and that needs to be taken into account.
Surveys of MS patients indicate they believe they should downplay input about certain symptoms. For example, pain that might be reported as a 7 on a 1-to-10 scale in an acute scenario may just be background noise to a patient who has lived with it long term. Even with a familiar and trusted provider, patients with a chronic condition can be reluctant to accurately report anything they feel might not be believed.
Our conclusion: Considering each patient as an individual with a unique lived experience leads to better quality of care, better compliance with treatments, and a better learning experience for the provider.
Looking at the schedule of presentations, patient input in MS care is a popular topic this year. It is validating to know that my co-authors and I are not the only ones who feel this way and want to bring awareness to this issue and advance a solution.
Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to multiple sclerosis.
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