Expert Insights

PV symptom assessment and tracking

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There are three important pieces of advice I’d give to any healthcare provider that’s seeing a polycythemia vera patient in regards to symptom burden.

Number one: to assess symptoms. Objective measures like the MPN10 not only can help conserve time by being a quick and easy snapshot of what their symptoms are doing, but can be objectively monitored, and a way to educate patients about what features and symptoms related to the disease I’m concerned about.

Number two is to actively monitor the disease. Know that symptoms are going to change over time, symptoms can be added or symptoms can go away, and to know if there’s an acute change in symptoms, that I want to know about that.

Number three is to know that there are specific etiologies of symptoms, and to search for those. Specifically, we know that not only can symptoms be a marker of treatment-related adverse events, but it also can be a marker of disease progression. In general, if we as clinicians can apply these topics to our practice, we can partner with our patients to improve their overall well-being.

There are multiple methods to assess symptom burden in patients with polycythemia vera as a healthcare provider. In the past, healthcare providers have asked just general questions related to how they think the patient’s feeling or doing, or what symptoms they’re experiencing. In the Landmark Survey, they looked at that in closer depth, and looked at the relationship between what healthcare providers felt that they were asking and their perception on the patient’s symptoms, and what the patient was experiencing. And what they were able to see is there was a disconnect.

Healthcare providers, although they’re asking symptoms, sometimes aren’t asking symptoms specific to the disease state or symptoms that carry the breadth of symptoms that we would need to be concerned about in polycythemia vera. We also saw that there were a fair amount of patients that were not knowing what symptoms to attribute to their disease and didn’t know to report it.

The myeloproliferative neoplasm symptom assessment score total symptom score, MPN10, is an objective assessment of symptom burden. What it does is takes patient responses that are rather anecdotal or subjective, and puts it into a quantifiable form that can be tracked over time. This is 10 of the most pertinent and representative symptoms that you can get in polycythemia vera, and other myeloproliferative neoplasms.

We know that patients with higher-risk disease features tend to have a total symptom score of greater than or equal to 20 or any individual item greater than 5. So if I see those items, I’m concerned that I might need to intervene on the symptom score for this patient. And this, again, might alter our management of these patients over time.

It’s important for patients with polycythemia vera to be an engaged partner in their symptoms and their overall disease management. There are numerous resources available online as well as other places for patients with polycythemia vera. One notable one is the PV symptom tracker on VoicesofMPN.com.

On this, patients can input data on symptom burden, specifically with MPN10 as well as data on their blood counts and phlebotomies that they can actually print off and bring to their clinician in the office.

It’s important because when a patient knows what their symptoms are and can tell me those, I’m able to help them, and together we can best optimize how they’re feeling and their overall quality of life.

We want to make sure that when a polycythemia vera patient comes in that we take them at full value of what’s going on in their disease, and we make sure that we do get this whole picture.

head shot of Dr Scherber
Robyn M Scherber, MD, MPH Assistant Professor Mays Cancer Center | San Antonio, TX
Dr Scherber is an active researcher focused on developing tools to address symptom burden among patients with essential thrombocythemia, polycythemia vera, and myelofibrosis. She has also been instrumental in the development of strategies to improve quality of life among MPN patients.