By Tjalf Ziemssen, MD, as reported to Keri Wiginton
Ziemssen presented “Development and Usability Testing of a Patient-based Digital Tool to Understand 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, attended by scientists Discuss the latest research on MS and other diseases of the brain and nerves.
I think it’s obvious to use digital tools or quantitative scores for certain things like a neurological exam. Until now, however, there has not been a standard way to capture a patient’s medical history. The MSProgression Discussion Tool (MSProDiscuss) allows us to capture a person’s neurological history in a structured way.
MSProDiscuss is a digital tool for healthcare professionals. You 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 include the person with MS as well. Therefore we have tried to ensure that the Your MS Questionnaire is user-friendly.
We know that people with MS like to give us input and want to be more involved in their treatment. You can fill out the questionnaire at home or before visiting the doctor. This gives their neurologist something to start a conversation with. We have found that both doctors and patients like this.
The hope is that a standardized medical history – something a doctor might update every 3-6 months – can give us more clues about the development and progression of MS. But it can also increase the “quality time” of an appointment. I wish that for my own practice. If I already have screening questions and know what the problems are, I can take a closer look at those problems.
Most patients think differently than their doctors. For them, it’s not just about the MRI activity or what’s happening at the pathological level. They are driven by symptoms. This questionnaire provides an approach that categorizes 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 get information about the possible course of the disease. But when I have answers from a screening questionnaire — say, about bladder function — I know I should start treating the bladder disorder symptomatically. If we see that there is a problem with pain or spasticity, we can treat it immediately.
So the questionnaire gives us information on two fronts: We learn more about the progression or development of MS, which might be important for disease-modifying strategies. And we learn things that can be helpful for each person’s symptom management.
It also covers all neurological symptoms, even those that aren’t that easy or fun to talk about. This can help us to help people who shy away from certain topics. And it does some of the paperwork before the visit begins. That gives people more time to talk about important things. If we can do that, I think we’ve managed to have a fairly successful visit.
We know that MS affects the way the body works in certain ways. These are called functional areas. We first ask if there is disease activity, either by MRI or relapse. Next we ask about symptoms in different bodily functions. For example, we ask if there are any issues or changes in:
If someone has worsening symptoms, they can answer some follow-ups. How often do you have them? Has it been a short time? Do they come and go? Are these problems always there? And if someone with MS 6 months ago answered these questions, we could compare whether their symptoms are the same or different. This can tell you if your MS is getting worse.
We also ask about the impact of the symptoms on daily life. This includes activities such as:
You can rate the severity of the impact from 1-5. This ranges from “no effect” to “you cannot do the activity because your MS symptoms present such a problem”.
The questionnaire helps us to 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 don’t systematically ask for updates, they could miss many symptoms. For example, people may not understand that their bladder function is related to MS. You may think that urinary problems are something to tell your urologist about, not your neurologist.
We also believe that a graded symptom history provides us with more sensitive information than simply having a neurological test every 6 months.
My dream would be that we would have a “checkbot” that people could use. It would come preloaded with standard screening questions that could dig deeper into the symptoms. History is becoming more and more important. And if you collect it in a structured way so that you can measure it, especially if you compare it to what’s happened in the last 6 months, I think you’ll get even more valuable information.