Expert Insights

Tools for Tracking Counts and Symptoms in Advanced Polycythemia Vera (PV)

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PV is a myeloproliferative neoplasm characterized by elevated blood counts, including hematocrit and white blood cell (WBC) count, and burdensome disease-related symptoms. Tracking blood counts and symptoms over time can be an important part of caring for patients with PV. A link is provided to an online tracking tool that patients can use to track blood counts and symptoms as well as other features of their PV.

In my practice, using the EMR to really track blood counts and how those change over time is really critical because I think that just looking at one CBC at a point in time is not necessarily indicative of the whole disease process. And so, being able to track the CBC in the EMR and graph that out I think is a very valuable tool. Additionally, tracking symptoms using the symptom assessment form is very valuable in my practice.

The MPN symptom assessment form is an objective validated tool that can help track symptoms of patients over time. It can assess to symptom severity. And then, it can be used at each visit to assess how the symptoms are either improving or worsening.

Anything that you can visually look at that has multiple data points all at one time, I think is essential for knowing what the disease is doing over time.

But I think coming up with a way to, number one, empower patients to be a part of their tracking—their symptoms, of course, but also of their counts if they're not seeing you every time. And then, coming up with a systematic way of documenting these counts and the symptoms I think will be critical for really getting a broad picture of what's happening with your patients, especially when you're not seeing them.

head shot of Lindsey Lyle
Lindsey Lyle, MS, PA-C Physician Assistant and Senior Instructor University of Colorado Cancer Center | Aurora, CO
Ms Lyle's clinical focus includes benign hematologic disorders and hematologic malignancies, with a special interest in myeloproliferative neoplasms (MPNs). Her clinical philosophy focuses on treating the person as a whole, taking every aspect of a patient’s physical and mental health into consideration during diagnosis and treatment. A national and regional speaker on hematologic malignancies, she is also involved in rural health outreach and improving health literacy among young people.