What Is the Relationship Between Emotional Stress and AML Prognosis?

Published on

Topics include: Treatment | General and Understanding

Is there a connection between emotional distress and acute myeloid leukemia (AML) prognosis? Can having a better understanding of disease behavior and treatment options improve a patient’s outcome? Noted AML expert Dr. Thomas LeBlanc, from Duke Cancer Institute, shares findings from a recent longitudinal study on factors that influence AML treatment outcomes and patient response rates. Watch now to learn more.

This is a Patient Empowerment Network program produced by Patient Power in partnership with The Leukemia & Lymphoma Society.  We thank Celgene Corporation, Daiichi Sankyo, Genentech, Helsinn and Novartis for their support.

View more programs featuring and

Produced in association with and

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.

Beth Probert:

So, I wanted to ask you, as well, you’ve been involved with research into the relationship between the emotional stress in AML patients and the overall prognosis. Could you please explain how the study was conducted, and what were some of the prevailing results of this study?

Dr. LeBlanc:               

Sure. So, we did a longitudinal study of patients with AML who were being seen and treated on our in-patient service. So, these were mostly patients getting high-dose chemotherapy who would be stuck in the hospital for a month or even a bit more. 

Like Jim described, getting these really intensive treatment regimens. And this was a study basically aimed at helping us better understand what people go through when they live that. And certainly, I've seen that in caring for many patients with AML, as have our nurses, and other members of the cancer care team, but actually, there has been very little formal, objective study of the patient experience with AML and related blood cancers. 

So, what we did is we actually surveyed patients using validated instruments, and we assessed their symptoms, their quality of life, their overall distress levels, and in addition, we assessed their understanding of their illness. Their understanding of what we call, "prognosis," The idea of what the likely outcome of the treatment or the disease is going to be. And we did all of those—that whole battery of assessments every week when they were in the hospital, and then when they were out of the hospital, we did that every month.

And we followed patients for six or even upwards of 12 months, and different things happened. Some people went into remission and were cured, some people had relapses, some people went into transplant, some people had transient remissions, or even multiple relapses, got additional treatment. And by following patients over time, we were able to develop a profile of the patient experience with AML and look at different versions of that. Including, what people understand about their illness, and how that relates to their overall emotional well-being. 

Beth Probert:               

That is amazing. And was there something that just jumped out really quickly as far as the largest response rate you saw when people were taking care of that emotional part?

Dr. LeBlanc:               

Well, the concerning thing that we found, which unfortunately is an issue across all of cancer care is that many people who are diagnosed with AML, especially when newly diagnosed, really don’t have a good understanding of the likely outcomes. 

And it's certainly not for lack of talking with patients and families about these issues, but it probably is a manifestation of the fact that this usually happened suddenly, as I mentioned, and it's so emotionally overwhelming and difficult that it's actually really difficult to contextualize the information that's provided. And we, I think, end up overwhelming a lot of patients and families with so much information, that sometimes there's a bit of a forest and trees problem, where maybe the most important factors don’t always get explained clearly or don’t come through well. 

And we don’t always go back and check in about whether we did a good job of explaining things, which is unfortunately a shortcoming that most of us struggle with in taking care of patients. Communication of complex information is very difficult. 

So, we found that many folks didn’t understand, for example, that the treatment they were receiving maybe wasn’t likely to yield a cure, which is true in some instances of AML. Or they might not have had a very good understand of the risks. So, one study, for example, suggests that AML patients may actually think the treatment is way more risky than it really is. And is that prompting some people to not receive intensive treatments that maybe could be the right choice for them and the most helpful for them. So, that was the one main interesting finding. 

And then, related to that, unfortunately we also found that many patients who do come to more accurately understand the outcomes that are most likely with their particular situation, some of these are better than others, everyone's different, the more accurately people understand their illness, there tends to me more emotional distress and sadness. Perhaps realizing that this is a very difficult disease to treat. And unfortunately, when we were doing this study, this was before we have eight new drugs approved in the last two years.

So, hopefully some of this has changed. But that's why we're having this webinar, and why we need to talk more about these issues. 

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.

Related Programs

ASH 2018 AML Treatment and Research Updates From an Expert Roundtable

Patient Power founders Andrew and Esther Schorr are joined by a panel of AML experts to discuss highlights from the 2018 American Society of Hematology (ASH) annual meeting in what they call an “AML treatment revolution.” Tune in to find out the latest news.

Published:

Genetic Profiling: Identifying High-Risk and Low-Risk AML Patients

What can you learn about your AML condition from your genetic profile? AML expert Dr. Ross Levine joined us at ASH 2017 to share the latest research on how molecular characterization affects AML prevention, progression and treatment.

Published:

“Like Riding a Roller Coaster”: An AML Patient’s View on the Emotional Impact of 27 Years With Cancer

Meet patient advocate and 27-year survivor Jim Bond. Watch as he shares how he coped with the emotional ups and downs of his myeloma and AML treatment journeys.

Published:

Advertisement
Join Our Community Register for Events Read Our Latest Blog
Advertisement

Page last updated on April 16, 2019