By Tjalf Ziemssen, MD, as told 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, 17-22 April 2021, where scientists discuss the latest research on MS and other brain and nerve conditions.
I think it’s obvious to use numerical tools or quantitative scores for certain things, like a neurological exam. But until now, there was no standard method for taking a patient’s history. With the MSProgression Discussion Tool (MSProDiscuss), we can measure a person’s neurological history in a structured way.
MSProDiscuss is a digital tool for healthcare professionals. They can use it to assess, track or spot early changes in multiple sclerosis (MS). But doctors don’t always see the big picture. We thought it would be helpful to involve the person with MS as well. That’s why we’ve worked hard to make the ‘Your MS Questionnaire’ user-friendly.
We know that people with MS are happy to give us their opinion and want to be more involved in their treatment. They can complete the questionnaire at home or before going to their doctor’s office. This gives their neurologist something in hand to start a conversation. We have found that doctors and patients like it.
The hope is that a standardized patient history — something a doctor could update every 3 to 6 months — can give us more clues about the course and progression of MS. But it can also boost the “quality time” of an appointment. It’s something I want for my own practice. If I already have screening questions and know where the issues are, then I can be more specific in how I approach those issues.
Early treatment of symptoms
Most patients think differently from their doctors. For them, it’s not just about MRI activity or what’s going on at the pathological level. They are motivated by symptoms. This questionnaire provides an approach that categorizes their disease and disease management into easy-to-understand categories.
For me, it is not only important to use this tool to have information on the potential progression of the disease. But if I have answers to a screening questionnaire – for example, on bladder function – I know that I should start symptomatic treatment for the bladder disorder. If we see that there is a problem with pain or spasticity, we can treat it immediately.
Thus, the questionnaire gives us information on two fronts: we learn more about the progression or course of MS, which could be important for disease modification strategies. And we learn things that can be helpful in treating each person’s symptoms.
It also covers all neurological symptoms, even those that aren’t so easy or fun to talk about. This can help us help people who might be hesitant about certain topics. And it eliminates some of the paperwork before the visit begins. It gives people more time to talk about important things. When we can do that, I think we’ve managed to have a pretty successful visit.
The 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 is disease activity through MRI or relapse. Then we ask about symptoms in different functions of the body. For example, we ask if there are any issues or changes in:
- Seen
- Fatigue
- While walking
- Balance or coordination
- Pain
- Unusual sensations or numbness
If someone has worsening symptoms, they may respond to some follow-ups. How often do they have them? It’s been a while? Do they come and go? Are these problems still there? And if a person with MS answered these questions 6 months earlier, we could compare whether their symptoms are the same or different. This may shed light on whether their MS is getting worse.
We also ask about the impact of symptoms on daily life. This includes activities such as:
- housework
- Conduct
- Hobby
- Go to work
They can rate the severity of the impact from 1 to 5. It ranges from no impact to you can’t do the activity because your MS symptoms are such a problem.
Get more details
The questionnaire helps us know if the symptoms of MS are stable or not. This is very important whether a person has secondary progressive MS (SPMS) or primary progressive MS (PPMS). If neurologists don’t routinely request updates, they risk missing many symptoms. For example, some people may not understand that their bladder function is related to MS. They might think that urinary issues are something they should talk to their urologist, not their neurologist.
We also believe that a graded symptom history gives us more sensitive information than simply performing a neurological test every 6 months.
And after?
My dream would be for us to have a “checkbot” that people could use. It would be preloaded with standard screening questions that could probe deeper into symptoms. History is becoming more and more important. And if you collect it in a structured way so 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 insights.