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Managing Cognitive Issues and MPNs

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Published on September 1, 2015

Are you forgetful, or are you just tired? Is it stress? Dr. Brady Stein and physician assistant Lindsey Kalhagen from Northwestern Medicine discusses the impact of cognitive-related issues in MPN patients. Ms. Kalhagen talks about how cognitive issues are evaluated and tips for bringing the information to office visits. Dr. Stein goes on to explain the research and treatment behind this issue.

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Robert H. Lurie Comprehensive Cancer Center of Northwestern University

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Transcript | Managing Cognitive Issues and MPNs

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.

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. 

Susan Leclair:

There will be stress issues, there will be cognitive issues.  I forget things more.  I can’t remember where I put my keys. 

I don’t remember what the right word was.  You mean I was supposed to be there 20 minutes ago?  Is it difficult for people to talk to you about cognitive issues, and how should that be handled? 

Lindsey Kalhagen:             

What we hope for all of our patients, and especially people with an illness where we’re having to see them on a more regular basis, is that you’re comfortable talking to us about anything and everything and that there’s nothing that is—we want to know about those things.  It’s important in your care and in the rest of your entire life about how things are going on a day-to-day basis and not only how that impacts your disease but how that impacts your life. So we would hope that there’s someone on our team, even with your primary care doctor, that you have an established relationship enough to be able to talk with us about that so that we can talk about what does that mean? 

Whether that’s bringing someone else with you to your visits, so that four ears are better than two and that everyone knows what’s going on or that you’re comfortable sending us messages or calling us when you leave the clinic and saying, “Hey, I forgot what you said about this.  Can you just run through it with me again?” And if it’s something else from medical standpoint, that we’re again not saying everything is because of one illness but that we’re evaluating is there something else going on that we’re missing or need to look into.

Susan Leclair:     

Okay. 

Dr. Stein:               

And I think we could add a little more, because this is really an important topic.  When patients have been asked, they reported these symptoms.  So, Dr. Mesa, who many of you probably know, he’s really an authority, a world authority on myeloproliferative neoplasms, and I think he really has ushered in the concept of capturing some of these very important symptoms that affect quality of life.  And if you look at these surveys, which patients have helped to validate, which are used in clinical trials and used to approve drugs, they’re also clearly very relevant in clinical practice. 

And if you look at some of these surveys, questions about fatigue, questions about depression, questions about impairments in concentration, these all come up and they’re very, very commonly reported.  So it’s important.  I think one of the latest to come to the fore is the issue of mood disturbances and it’s not yet published, but it’s part of an abstract and when doing surveys of a lot of patients with myeloproliferative neoplasms, it’s becoming more clear that there very well could be undiagnosed mood disorders, depression.  And that clearly interacts with your disease.

So and it can be almost a vicious cycle in a way.  You have the stress and anxiety of a new disease and a disease that’s a very—a group of diseases that are very physical for patients.  There [are] a lot of physical symptoms.  With physical symptoms, it can get demoralizing when it’s harder to do the things you’re used to doing.  When it’s harder to do the routine that can be depressing.  The stress level, the emotional burden, and then it becomes a cycle.  You have less motivation to do the things you should.  And then this can lead to depression, which can carry a number of the same physical and emotional symptoms that an MPN can carry.

So sometimes we’re trying to treat symptoms that we may think are related to the MPN, but in fact there certainly could be depression that’s making your experience of the disease a lot worse.  So I think it’s really important for us to be mindful of this, and it’s important for you to tell us.  If we’re not asking and it’s something that you see or you’re experiencing or as importantly, sometimes it’s the caregiver that brings it up because the patient may not want to bring it up.  It’s important because it could change the way we treat or it could lead to the involvement of another colleague that could help us with this aspect.

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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