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Evidence-based Care: Symptom and Spleen Assessment in Advanced Polycythemia Vera (PV)

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PV is a hematologic cancer that may be associated with significant symptom burden, some of which may be associated with splenomegaly, which occurs in up to 30% of patients. Previous studies of patients with PV provide insight into symptom burden and splenomegaly. Evidence from these studies may inform care of these patients.

When I'm caring for a patient with advanced polycythemia vera, I'm looking at them comprehensively.

In the Landmark survey, 66% of patients reported having significant symptoms that impacted their quality of life. And the biggest one of these was fatigue, which was important in 73% of these patients.

Additionally, in another study of over 1300 patients that looked at hydroxyurea use in patients, we saw that the majority of patients despite treatment with hydroxyurea were still having symptoms. So in these patients with advanced polycythemia vera, monitoring them for symptoms is a big part of what we do because we know that hydroxyurea doesn't necessarily hone in or target the cytokine-related side effects.

Assessing symptoms in patients with advanced polycythemia vera is a very important part of my care plan of the patient. These patients aren't maybe necessarily able to work or to function in their home life as well as they used to in the past.

It's important to ask patients pointed questions about their symptoms as some of the symptoms related to polycythemia vera can be quite vague. Patients may not actually know that the symptoms they're experiencing are a part of their disease or a manifestation of their disease... It's also very important to try and quantify as much as possible these symptoms, especially such as fatigue.

So if a patient comes to me and tells me they're tired, I have to really try to dig into what does that mean for the patient. Are they able to walk up a flight of stairs? Are they able to unload the dishwasher? Are they able to cook dinner? How many naps are they taking a day? So you have to dig a little bit deeper into the specifics of these symptoms that are reported from the patient.

Additionally, when talking to the patients about these specific events that may be occurring, involving the caregivers as they are sometimes more objective about how the patient is actually feeling.

There is a short 10-question form that the patients can use in collaboration with their providers to track how their symptoms have changed over time.

So assessing the spleen in polycythemia vera is just as in any other disease process at its start. So in a routine physical examination and abdominal exam, we'll be palpating for a spleen. In polycythemia vera, only about perhaps up to 30% of patients have splenomegaly. However, on routine exams, if on palpation you're noticing that the spleen is getting larger and larger, that may indicate progression to perhaps myelofibrosis or more advanced state of their polycythemia vera.

It is important to actively monitor patients with advanced polycythemia vera because this can be a dynamic disease process and things can change over time, patients may develop symptoms—or the symptoms that they currently have may worsen. So it's very important to keep a close eye on these patients.

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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.