Expert Insights

Empowering Patients With Advanced Polycythemia Vera (PV) Through Personalized Care

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PV is one of the myeloproliferative neoplasms. In PV, production of blood cells becomes uncontrolled. It is important to view patients in a comprehensive fashion and to recognize and help patients achieve personal goals despite their disease. In addition, advanced practice providers (APPs) can help identify reliable sources of information on the Web for patients who want to self-educate.

My goals for caring for patients with advanced PV are really to help them live the best life they can for as long as they can.

Getting to know the patient and understanding what they might want to achieve either in the short term or in the long term and then trying to make that possible. So perhaps that is being able to walk around the block, perhaps that is being able to go to a family function and stand the whole time.

Really thinking of the patient as a whole person, not only as a patient with a medical condition, but also a patient who has goals for their own life and helping to view the patients in this way helps you to treat them in a more comprehensive fashion.

There are a variety of things patients with advanced PV can do to improve their overall well-being. I think that the biggest factor is keeping their activities that they did even before their diagnosis. So if that means doing certain hobbies or spending time with family and friends, I think that's very important to continue to do that. Additionally, exercise is very critical. And I encourage all of my patients to do some form of exercise at whichever level they are able to do this. The number one symptom of patients with polycythemia vera that's reported is fatigue. And actually, exercise can really help mitigate this fatigue even though it seems counterintuitive.

So patients with advanced PV are always looking for information. They always want to know how they can perhaps make their situation better. They want to gain knowledge to be an active participant in their care. And oftentimes, our patients go to the internet. It's easily accessible. It's right in front of their face. And Dr Google will provide some information, but it may not be accurate. And so there are variety of resources that I tend to use for my patients where I know they're going to get validated good information that is accurate.

And so some of these would be Patient Power, Voices of MPN, MPN Research Foundation. All of these offer comprehensive information for patients to go and gain knowledge about their disease. It also may prompt them to ask you questions when they come back to see you, based on something that they read. And then, that opens the door for another type of conversation with the patient.

We're on this journey together, so I'm also asking them what are their goals of management and what do they want for their life. And then, I can take their goals and work them into how I'm going to approach my management strategy for these patients and work so that we can both achieve our desired goals.

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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.