By Tjalf Ziemssen, MD, as narrated to Keri Wiginton
Ziemssen presented “Development and Usability Testing of a Patient-Based Digital Tool for Understanding Early Signs of Changes in Multiple Sclerosis Symptoms and Progression: Your MS Questionnaire” at the 73rd Annual Meeting of the American Academy of Neurology, April 17-22, 2021, where scientists discuss the latest research in the disease. Multiple sclerosis and other brain and nerve conditions.
I think it’s obvious to use numerical tools or quantitative scores for certain things, like neurological examination. But until now, there has been no standard way to collect a patient’s history. Using the MSProgression discussion tool (MSProDiscuss), we can measure someone’s neurological history in a structured way.
MSProDiscuss is a digital tool for healthcare professionals. They can use it to assess, track or detect early changes in the course of multiple sclerosis (MS). But doctors don’t always get the full picture. We thought it would be helpful to get the person with MS involved as well. That is why we have tried to make sure that Your MS Questionnaire is easy to use.
We know that people with MS are happy to give us information, and want to be more involved in their treatment. They can fill out the questionnaire at home or before they go to the doctor’s office. This gives the neurologist something on hand to start a conversation with. We’ve found that both doctors and patients love this.
The hope is that a standard patient history — something a doctor may update every 3-6 months — can give us more clues about the development and progression of MS. But it can also enhance the “good time” of a date. This is something I want for my own practice. If I already have screening questions and know where the issues are, I can be more precise about how to address those issues.
Treating previous symptoms
Most patients think differently than their doctors do. For them, it’s not about MRI activity or what’s going on at the pathological level. They are symptom driven. This questionnaire offers an approach that puts their disease, and the management of that disease, into easy-to-understand categories.
For me, it is not only important to use this tool to obtain information about possible disease progression. But if I have answers from a screening questionnaire – for example, about bladder function – I know I should start treating the symptoms of a bladder disorder. If we see that there is a problem with pain or cramping, we can treat that right away.
So the questionnaire gives us information on two fronts: We learn more about the development or progression of MS, which may be important for disease-modifying strategies. And we learn things that can be helpful in treating each person’s symptoms.
It also covers all neurological symptoms, even those that are not easy to talk about. This can help us help people who may be shy about certain topics. And he gets some paperwork out of the way before the visit begins. This gives people more time to talk about important things. When we’re able to do that, I think we’ve had a very successful visit.
Your MS questionnaire
We know that MS affects how the body works in certain ways. These are called functional domains. We first ask if there has been pathologic activity either through MRI or relapse. Next, we ask about symptoms across different bodily functions. For example, we ask if there are any problems or changes in:
- balance or coordination
- Unusual sensations or numbness
If someone has worsening symptoms, they can answer with some follow-ups. How often do they have them? Has it been a while? Do they come and go? Are these issues present all the time? And if someone with MS answers these questions 6 months ago, we can compare whether their symptoms are the same or different. That could shed some light on whether their MS is getting worse.
We also ask about the impact of symptoms on daily life. It includes activities such as:
- Home Business
- going to work
They can rate the severity of the effect from 1 to 5. This ranges from no effect to not being able to do the activity because your MS symptoms are too problematic.
Get more details
The questionnaire helps us know whether the MS symptoms are stable or not. This is very important whether someone has secondary progressive MS (SPMS) or primary progressive MS (PPMS). If neurologists do not request updates in a systematic way, they may miss many symptoms. For example, people may not understand that their bladder function is related to MS. They may think that urinary problems are something they should tell the urologist, not the neurologist.
We also believe that a graded symptom score gives us more sensitive information than just a neurological exam every 6 months.
My dream is to have a “checkbot” that people can use. It will be pre-loaded with standard screening questions that can dig deeper into your symptoms. History is getting more important. And if you collect it in such a structured way that you can measure it, especially if you compare it to what’s happened over the last six months, I think you get more valuable information.
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