The Fatigue Project: Improving Quality of Life for MPN Patients

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What is The Fatigue Project?

Dr. Mesa:

Well, The Fatigue Project really has as its focus trying to better define and hopefully impact the fatigue that MPN patients face.  So this was a bit of the brainchild of a patient advocate and MPN patient Zhen Senyak, who runs the MPN Forum.  Now, we've done many quality-of-life and questionnaire-based surveys of MPN patients in the past and have clearly seen that fatigue is a big issue, but in collaboration with Zhen and MPN Forum really wanted to delve into this in a three-part way that was much more intensive. 

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.