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Understanding MPN Symptom Scoring Systems

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Published on August 1, 2019

How do doctors measure and track a myeloproliferative neoplasm (MPN) patient’s symptom burden over time? Expert Dr. Robyn M. Scherber, from the Mays Cancer Center at UT Health San Antonio MD Anderson, discusses the recommended tools used to evaluate common MPN symptoms and how the symptom “score” can indicate if a person is responding well to therapy. Watch now to learn about assessment of myeloproliferative disease symptoms.

Visit https://www.voicesofmpn.com/pdf/mpn-symptoms-form.pdf  to learn more about the Myeloproliferative Neoplasm Symptom Assessment Form (MPN-SAF). 

The Partners series is sponsored by Incyte Corporation. We thank them for their continued support. This organization has no editorial control and Patient Power is solely responsible for program content.

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Transcript | Understanding MPN Symptom Scoring Systems

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That's how you’ll get care that's most appropriate for you.

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

Andrew Schorr:        

Okay, Robyn. So, first of all, these situations that Andi and Sue have just mentioned, you’ve heard about them before, right? You hear about them probably too often.

Dr. Scherber:            

Yeah, they’re extremely common. We look at fatigue alone, and over 90 percent of patients with MPNs deal with fatigue that’s often quality-of-life limiting, function limiting. They have a hard time being around family and friends and loved ones. There’s a lot of other symptoms too that patients experience that we didn’t actually mention so far. So, especially headaches, concentration difficulties, problems sleeping. And one of the most common things that we don’t like to talk about as clinicians I think enough, because it’s a difficult conversation: sexual difficulties.

Andrew Schorr:        

Okay. Now, you and Dr. Mesa there, you’ve worked on sort of a scoring system to help doctors around the world. So, tell us about that, this sort of—what the name of that scoring system is, to help doctors kind of quantitatively look at what a patient is dealing with.

Dr. Scherber:            

Yeah, so, back in 2007, my long-term mentor, who I’ve worked with now for over a decade, Dr. Reuben Mesa, was one of the first ones to actually look at symptom burden in MPN patients. And so, he actually published those results. But based on those, he created an initial symptom assessment form called the MFSAF, myelofibrosis symptom assessment form, that looks specifically at symptoms that were some of the most common symptoms for myelofibrosis.

I started working with him around 2008, 2009. And then 2011, we validated the myeloproliferative neoplasm symptom assessment form, or MPN-SAF. And then we condensed it down to just the ten most representative and kind of pertinent symptoms, and it was called the MPN10. But we also call it – and it’s a bit of a mouthful—the myeloproliferative neoplasm symptom assessment form total symptom score, also called sometimes the TSS score.

Andrew Schorr:        

Okay. So, this is a way that someone can go to the doctor, and they can describe what they’re dealing with, and it can kinda be scored. And then that can be a guide to what to do about it.

Dr. Scherber:            

Right. What’s unique about these scoring systems is, it puts basically the report in the hands of the patient. It’s called the patient-reported outcome, or they also call them pro measures, P – R – O. This allows the patient firsthand to pretty much tell us, in an objective way, how they’re feeling.

With the MPN10, though, scoring is pretty easy. We score each of ten items on a 0 to 10 scale, so, a total score of up to 100. And we’ve done a lot of different fancy analysis and looked at what are some of the most common scores, what are the lower scores, the higher scores. And so, just based on looking at your scores and then kind of objectively saying what your symptom burden is, and then most importantly, how it changes over time, an objective measure to actually see if you’re responding to therapy, or is therapy worsening the symptoms that you have.

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.