The Fatigue Project: Improving Quality of Life for MPN Patients

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Topics include: Treatments

Dr. Ruben Mesa gives an overview of The Fatigue Project and what he and his colleagues hope to learn about combating fatigue, a prevalent symptom among many MPN patients. Dr. Mesa discusses “non-medical interventions” and describes various phases of the project that help to give an in-depth understanding of how treatment, lifestyle and routines can impact symptoms. 

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Transcript

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

What is The Fatigue Project?

First, there was a questionnaire that was sent out through the MPN Forum regarding fatigue and what aspects people are doing to try to overcome their fatigue. 

The second phase, which we'll be initiating now hopefully in December, is a much more in-depth anonymized questionnaire where we could truly try to drill down on the origins of fatigue, things people are doing to try to impact their fatigue, how medicines are impacting their fatigue and what are the opportunities. 

The third phase, which may be the most challenging, is we hope to look at that second set of questionnaires and try to develop a further intervention to try to improve MPN-related fatigue in addition to whatever baseline medicines individuals are on.  So we're looking at nonmedical interventions per se, whether that be exercise in a structured way, whether that be walking, whether that be other interventions in terms of sleep or uncovering insomnia, uncovering mild depression.  Whatever it is, we're trying to delve deeper, because it is by far the most prevalent MPN symptom.  In many, it's the more severe.  It clearly has been improved by JAK inhibition, but there still remains much opportunity. 

Can patients still participate?

Correct.  So the second phase, which will be a questionnaire, will be available online in the near future, and we'll be distributing the links to that questionnaire in very short order. 

What is your hope for this data?

Our hope is that we could truly try to impact the quality of life for patients in MPN.  I mean, we are very pleased with ill improvements in pharmacotherapy, specific JAK inhibition in terms of fatigue, where in the past really very little had an impact to the fatigue in these patients.  We recognize that there is a lot of opportunity to improve that further, and recognize as well that there are a lot of things that contribute to fatigue that go on just beyond pharmaco or medical therapy.  So we are hopeful to be able to give individuals a deeper toolkit, if it were, to try to help battle what is really one of the most prevalent difficulties. 

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

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Page last updated on April 9, 2015