Episode 83: Staging PD – UPDRS: What it Measures and What Your Score Means

Dan Keller 0:08

Welcome to this episode of Substantial Matters: Life and Science of Parkinson's. I'm your host, Dan Keller. At the Parkinson's Foundation, we want all people with Parkinson's and their families to get the care and support they need. Better care starts with better research and leads to better lives. In this podcast series, we highlight the fruits of that research—the treatments and techniques that can help you live a better life now, as well as research that can bring a better tomorrow.

Parkinson's disease rating scales are important tools to evaluate the state of a person's disease and any changes over time. A common rating scale is the Movement Disorder Society Unified Parkinson's Disease Rating Scale, or MDS-UPDRS. It consists of four sections and subsections within each. The first section rates thinking, behavior, and mood; the second, activities of daily living; the third, motor function; and the fourth, complications of therapy. In the end, there's a composite score that represents the severity of disease. A potential problem is that people with PD and their care partners may put too much emphasis on this number when a broader view of their disease state may be more appropriate.

Movement disorder specialist Dr. Nina Browner of the University of North Carolina at Chapel Hill describes what the MDS-UPDRS involves and how it came about, and she offers her perspective on how it should be viewed and what people should be looking for besides a rating scale number to make their own lives better.

Dr. Nina Browner 1:59

UPDRS is the scale that all of my patients know I'm going to do with them, because this is when you come to the office and suddenly they ask you to do tap your leg and tap your fingers, and it seems to many times to the patients and the care partners that it's pretty much the same motions that the doctors go through, but actually what happens during the movement disorders exam is that we do this scale, the UPDRS scale.

So, what's interesting about this scale is that many years ago, back in 1980s, every single movement disorder center had had scale, and these scales were focusing on motor symptoms of Parkinson's disease, some non-motor symptoms, such as, like, depression, anxiety, for example, intellectual functioning, but all of the centers were using different types of scales. So the centers in New York were using one scale, the centers in Chicago another scale, and when it came to do clinical trials or talk about treatment and whether treatment was beneficial for a patient, it was impossible to compare the results from different centers. And that's how, in 1980s, the idea came that that should be united rating scale that would basically unite all of the centers, and should the centers eventually unite to do some kind of a clinical trial or treatment for people with Parkinson's disease, they'll be the same thing that they would do, and then the patient will be assessed in same way, and you could track the results of your clinical trial or your treatment, and this is how the UPDRS came to be, and it would cover specific symptoms of the patients.

So there was this part where we would ask questions about cognition, there's another part where we ask questions about how people are doing in everyday life, and then we'd look into their motor function. And we live with the scale for a solid 20 years, almost, when eventually we started to realize that some of the questions were not completely covering everything. Some of the things, for example, in patients' life are not covered by the scale and thus not necessarily covered during the conversations in the office, and so eventually, a few years ago, we decided to put together an industry team that looked into the UPDRS scale and realized that there could be improvements. For example, urological symptoms were not addressed by that scale. For example, patients who were taking dopamine agonists, which is the pramipexole or ropinirole, had known to have side effects, and we never asked for the side effects because the scale never prompted the doctor to ask. And there were other examples to what the old UPDRS were not covering, and so the team found this gaps in knowledge, and the new version, which is called MDS—from the Movement Disorder Society—UPDRS scale has been created, and that is the scale that right now used, again, for regular follow-ups, regular visits with the patients and care partners, but also in all of the clinical trials and all of the work that we do when we try to track patients' progression.

Dan Keller 5:15

Now the entire scale has four main parts, and under each one of those are different questions. Let's just take an example. How do you score something? What's the rating scale, and do you add them up, or how do you get a composite score?

Dr. Nina Browner 5:30

Absolutely, it's a great question. So, what I like about MDS-UPDRS scale is that now actually there's a component where the patient themselves answer questions. So it used to be that the rater, or usually that would be a physician, who would do the UPDRS scale, but now you, as a patient, can empower to participate in your own assessment. And the parts as such is that there's a part one—usually part one talks about non-motor symptoms. So there's a very specific question about the cognition, presence of depression or anxiety or apathy, and it's extremely well written out, so it goes from zero to four, and for every single step—0, 1, 2, 3, and 4—you have actually pre-written a specification of what should happen to the patient, and so you, as a person who basically does the scale, doesn't have to wonder. You actually have to do what needs to be done and then see where the patient fits. Does it make sense?

And so then this part two is usually motor symptoms that are important for everyday activities for a patient, so for example, getting out of the bed or getting out of the chair or turning in bed, you know, so that's the questions that we ask.

The third part is a motor symptoms, that's what the patients usually laugh about and ask, why do I always have to tap my fingers and why do I always have to tap my leg, but that's actually something that is part of the motor part, part three of UPDRS.

And then the last one is stage to be a place where we talk about so-called motor fluctuations, where people have extra movements or wiggles, we call them, or dyskinesias, or when we talk about when patients have wearing off and whether some of them are painful with cramps of the muscles, so-called dystonia, and that's where we scale and try to understand how much they influence in patients' life, and we actually put this all together.

Now, here's what happens next. Next, we actually score every single part separately, and when you see sometimes studies that are published, you can see that somebody would say UPDRS part three score by patients was, and they give you just kind of like from, I don't know, 17 to 23. What it does to other people who read the study, it gives the idea what is the type of Parkinson's disease we're talking about—very early stages, more moderate disease, a lot of motor disability, not so much motor disability—because on this scale, the higher the number, the more disability or the worst symptoms we perceive patients have, or patients themselves report.

Dan Keller 8:18

So, what's a patient to make of this? How can they interpret their scores without getting overly concerned, but knowing where they stand?

Dr. Nina Browner 8:28

It's a good question. I'm not sure how often the medical professionals are sharing the scores with the patients, and also I am not sure whether the score of 17 or 23 or 25 or 30 is of any meaningful use for the patients. I think what's usually we see in the clinic is more useful when we do, for example, the motor part of the UPDRS, the patients themselves looking at how they produce in the movements, and they noticing that left is worse than the right, or vice versa, and they can say, like, oh, it's getting better, or look, I'm not able to do what I used to do. And as you all know, movement disorder exam is very interesting exam within itself, because it's something that is very obvious to the person who does the exam and the person who performs the exam, and so I think it's beginning of the conversation about, so how do you think about your right hand, knowing that your right-handed patient being so much slower? Do you feel that the medication doing the job that they need to do?

By the same token, and when we talk about part one, when we start talking about depression and anxiety, I think that the score is less important as to ask that question and be able to hear an honest answer, because there is a lot of studies out there now that shows that UPDRS can be amazing screening tool for such, I would say, stigmatized ideas as I have depression or I have anxiety or I have apathy or I have cognitive impairment. And so I think that, in a way, UPDRS normalizes these symptoms within the patient population because the doctor asks the question, it's the same question that used to be asked before, and I'm expecting this question, and I'm actually prepared to answer it now.

It's very interesting. One of the important physicians who worked on UPDRS scale is Dr. Christopher Goetz. He is in Chicago, very prominent movement disorder specialist, and he sometimes says that he feels that sometimes with UPDRS, since we ask so many questions, some patients feel that all of these symptoms will happen to them. So since you're asking depressions, and you're asking me about anxiety, and asking about hallucinations, I should expect this all things to happen to me. And I wish I could send a message with this podcast to all our patients and care partners and tell them that even though we do ask these questions, it really does not mean that it will happen personally to you. What it is, is that it's a scale that tries to basically encompass all of the patients with Parkinson's disease and make sure that we're able to provide a very holistic approach to all of the patients.

The answer of no or zero on our scale is actually is a fair answer, and we expect zeros. We want to see zeros. We also want the numbers not to increase for many, many years. We want the numbers to decrease in many times if the person follows the instructions about medications, physical therapy, mental health therapy, occupational therapy, speech therapy, and so on, so forth, because we know they will improve people's function. And so I want to say that I would not have so much of the focus on a number of the scale. I would focus on your activities of daily living, how much can you do with Parkinson's disease, and whether you are leading a really healthy and productive life with it.

Dan Keller 12:04

Beyond being a research tool, now that you've standardized these measurements, is it informative to the doctor? I mean, at any one visit, the doctor probably has a very good impression of the person's state of his disease, but does this help the doctor know what they were like four months before? It's really a snapshot in time. So, is the change in it more indicative than the actual numbers?

Dr. Nina Browner 12:31

Yes, I think that the change is more indicative for us as providers. So, it's not uncommon for us to go back to UPDRS two, three years ago to really understand what is the progression overall for this particular patient. Now I would say that just thinking about the progression of Parkinson's disease, I want to put it out there that UPDRS is the only one of the tools, okay? We have other means to understand the progression, and many times our care partners and our patients themselves will tell us that, "I have nothing to report, I'm doing pretty much the same," or "I feel that for the past six months things were not going the right direction."

And the other thing also to consider is this, is that there's so many different things that influence Parkinson's disease. Diagnosis of depression, or developing depression, or developing anxiety can actually worsen your motor scores. You can actually feel that you're not moving as much, so you see non-motor symptoms and suddenly influencing negatively the motor symptoms. So, on your UPDRS, you could look at the pure motor scores and say they're worse, but then you always want to look at the part one and see weight depression actually, or anxiety, or cognitive impairment actually becoming worse in our disease, and that may be influencing the feeling of the progression, or it may influencing that on a scoring it looks like we are progressing. And so, should we address depression? Should we address anxiety? Should we modify something to address the cognitive impairment? We could sometimes see improvement in the motor scores as well.

So I think it's not only one way direction things are going to get worse, and that's how you see worsening of the motor score. I think it's more about trying to see how the parts are connected to each other, how the parts influence in each other, even if the scores are getting worse or then getting better by addressing some of the issues that we found.

Dan Keller 14:37

Is there anything interesting or important about UPDRS we've missed that's worth saying to this audience?

Dr. Nina Browner 14:44

Again, my message would be, please do not follow too closely this scores. I think that numbers are irrelevant. I think what's most important is your attitude towards your disease, your ability to create amazing supportive environment around you, which will include the village. And the village should be your doctor, the nurse practitioner, the social worker, your care partner, your family, your friends. I think this is the most important. I think it's important to know what would you like to do, and to live a little bit in the moment, and enjoy your life and always ask yourself whether I'm able to do what I wanted to do, no matter whether I have Parkinson's disease or not.

And all the rest of the skills that's commonly used—UPDRS or the other one is Hoehn and Yahr, which is basically a stages of Parkinson's disease, and other ones—should be left to doctors and kind of like a research world. And I think that the litmus test of how I'm doing with my Parkinson's disease should be more overall idea how productive you are, how healthy and happy do you feel, and if you're not, what actually should you change along with your support village. What should you change to make your life with Parkinson's disease, your living with Parkinson's disease, much better? I think that would be my message.

Dan Keller 16:11

Excellent. Thank you.

For more on the UPDRS and the Hoehn and Yahr staging of Parkinson's, you can visit www.parkinson.org/stages. This section of the website describes the different stages of Parkinson's and how Hoehn and Yahr and UPDRS help us understand the different stages of PD. We also recommend an article titled "What's Hot in PD: Measuring Quality and Assessing Depression in Parkinson's Disease," which can be found in the "Recommended for You" section of that page. It describes a study called Mood-PD that compared nine depression scales. Interestingly, as extensive as the UPDRS is for measuring symptoms and assessing functionality associated with Parkinson's, it did not perform well in screening for depression, which is more common with PD than people had thought. So, doctors should always screen for depression, since it can be well managed if detected. In the Mood-PD study, the UPDRS performed the worst in screening for depression and was not recommended. The rest of the scales performed well.

Through its grants and initiatives, the Parkinson's Foundation continually strives to develop tools to better define the stages of PD and standardized care assessment to help physicians detect and document changes in a person's disease. On other matters, our PD Health @ Home virtual educational and wellness programs continue and are free and online, including Mindfulness Mondays. To register for upcoming Mindfulness Mondays, or to see past ones, go to parkinson.org/pdhealth. For an introduction to what mindfulness is and what it can do for you, listen to podcasts 78 and 80.

As always, our PD Information Specialists can answer questions and provide information in English or Spanish about today's topics or anything else having to do with Parkinson's. You can reach them at 1-800-4PD-INFO. To receive news and updates about future events and resources, you can opt into our email list at the bottom of our website's homepage. If you have questions or want to leave feedback on this podcast or any other subject, you can do it at parkinson.org/feedback, or if you prefer, email us at podcast@parkinson.org.

If you enjoyed this podcast, be sure to subscribe and rate and review the series on Apple Podcasts, or wherever you get your podcasts. At the Parkinson's Foundation, our mission is to help every person diagnosed with Parkinson's live the best possible life today. To that end, we'll be bringing you a new episode in this podcast series every other week. Until then, for more information and resources, visit parkinson.org or call our toll-free helpline at 1-800-4PD-INFO, that's 1-800-473-4636. This episode is supported by a grant from Genentech, a member of the Roche Group. Thank you for listening.

Dr. Nina Browner is Bryson Distinguished Associate Professor of Neurology and Director of the Parkinson Foundation Center of Excellence at the University of North Carolina. She also serves as Vice Chair for Education for the Department of Neurology and Program Director for Neurology Residency at the University of North Carolina.

After graduating from the Moscow Medical Academy in Moscow, Russia, Dr. Browner received prestigious Research Presidential Scholarship of the Russian Federation and spent two years at Johns Hopkins University as a post - doctoral fellow doing research in functional MRI and Parkinson’s disease. She then completed neurology residency at the Cleveland Clinic Foundation, Cleveland, Ohio and her fellowship in Movement Disorders with Dr. Stanley Fahn at the Columbia University Medical Center, New York, New York.

Dr. Browner divides her time between patient care and clinical research. Her research interests include innovative care models for patients with neurodegenerative diseases, gait abnormalities in patients with Parkinson’s disease and cognitive changes on different stages of Parkinson’s disease. In addition to her dual roles of clinician and researcher, Dr. Browner mentors medical students and neurology residents. She had been awarded Collin Hall Award in Teaching Excellence from the Department of Neurology at the University of North Carolina, Chapel Hill as well as 2020 A.B. Baker Teacher Recognition Award from the American Academy of Neurology.