Tag Archive for: MPN symptom burden

Dr. Krisstina Gowin: Why Is It Important for You to Empower MPN Patients?

Dr. Krisstina Gowin: Why Is It Important for You to Empower MPN Patients? from Patient Empowerment Network on Vimeo.

Empowerment for myeloproliferative neoplasm (MPN) patients is a vital part of their care, but how can providers help with this? Dr. Krisstina Gowin from the University of Arizona shares key ways that she helps empower her patients and explains some reasons why patient empowerment is important in their care.

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Transcript:

Dr. Krisstina Gowin: 

I think the first key to empowerment is education. And so anytime I meet a patient, I spend a significant amount of time really making sure they understand their disease and what are the treatment goals, and how do we best achieve those together? And I think for MPNs in particular, that I want them to understand that, yes, we want hematologic response, we want to control your blood counts and your numbers, we want to reduce those thrombotic complications, we want to control your symptom burden, so so important, your quality of life and symptom burden is part of the disease management.

And so I want them to understand what is symptom burden, and how is it measured, and how do we best achieve chronologic measurements? Do they do that at home? Is it best in clinic, are they going to be journaling? So symptom burden and measuring, and then the other is wellness and the management of cardiovascular risk factors, and so education around all of those for my MPN patients.

And then why is it important while it’s important because we want our patients to feel empowered, we want to feel like they are driving the bus and contributing to their own survivorship and wellness, and so how do they best do that is through education and then again, getting the tools they need to really navigate their journey in the most precision and personal, personalized way as possible, and so that’s really my strategy is education and empowerment.

How Has COVID-19 Impacted Myeloproliferative Neoplasm Care?

How Has COVID-19 Impacted Myeloproliferative Neoplasm Care? from Patient Empowerment Network on Vimeo.

How has myeloproliferative neoplasm (MPN) care been impacted by COVID-19? Expert Dr. Krisstina Gowin from University of Arizona Cancer Center shares information from an MPN care study by the Mayo Clinic on some of the impacts experienced by patients. 

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Transcript:

Lisa Hatfield: 

So the pandemic has resulted in significant changes to many aspects of daily living for many of us, but for patients living with cancer like myself, there are different realities that we’ve had to deal with. Do we go in for our monthly blood draws, or do we wait a couple of months? So question for, Dr Gowin, can you give us an overview of the impact that COVID-19 has had on MPNs or MPN care?

Dr. Krisstina Gowin: 

Absolutely. Well, there was a really wonderful study that was done, really led out of Mayo, by Jeanne Palmer and Ruben Mesa, and it was an international study, and it looked at 1,500 MPN patients. And they asked questions like, “How many of you are actually having telemedicine?” And this was in 2020, kind of at the beginning. And over half of them had already been engaging in telemedicine. And about a quarter of them felt that their care actually was delayed a little bit and that there were actually consequences to that delay, so that really speaks to an international kind of change in the paradigm of how we’re delivering care for MPN patients. The other thing is the lockdowns, the lockdowns that were occurring for us here in the US and really internationally. And what they did is, they asked patients their MPN symptom burden, and those that were on lockdown, not surprisingly I think to all of us, had a significantly higher symptom burden.

So I think that really speaks to that A, yes, there was a very large impact of COVID on the development of telemedicine and the need for telemedicine. But it also underscores the need for symptom management that we now have a group of patients that are having a higher symptom burden, probably likely secondary to more sedentary behavior, more anxiety, more depression, but a higher symptom burden because of COVID. And so we really need not only more therapeutics and perhaps non-pharmacologic interventions to support their symptom burden, but it needs to be delivered on a digital platform.


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