Expert Perspective | The Value of Empowering AML Patients and Care Partners

 

How can patients with AML and their care partners feel empowered? Dr. Eric Winer, an AML expert, discusses the crucial role of the healthcare team and emphasizes the importance of open communication, asking questions, and understanding the care plan. 

Dr. Eric S. Winer is Assistant Professor of Medicine at Harvard Medical School and Clinical Director of Adult Leukemia at Dana-Farber Cancer Institute. Learn more about Dr. Winer.
 

Related Resources:

Distinguishing AML Symptoms and Side Effects | Why Communication Is Essential

Distinguishing AML Symptoms and Side Effects | Why Communication Is Essential

Expert Advice | How to Elevate Your AML Care and Treatment

Expert Advice | How to Elevate Your AML Care and Treatment

Advice for Managing Emotions Around AML

Advice for Managing Emotions Around AML

Transcript: 

Katherine Banwell:

As a provider, Dr. Winer, how do you empower care partners and patients who have been diagnosed with AML? 

Dr. Eric Winer:

From a provider standpoint, one of the most important things we need to do is listen and try to understand, first of all, what the patient is going through, and what the patient needs. Like I said, that’s where this is a team approach. It’s a team approach from not just a standpoint of patient and caregiver, patient and physician, patient and nurse practitioner or physician’s assistant, patient and social worker. 

This is a traumatic experience, and there are things that we can try to do to make it less traumatic, but one of the best ways to make it less traumatic is making sure patients are informed, that patients understand plans, that patients understand what’s going to be happening. One of the biggest concerns with any of these diseases is the unknown. There is a certain amount of unknown that I can’t predict.  

I can’t say to somebody you will or will not respond, but what I can say is, listen, here is what we’re going to be doing over these next few weeks, and here is our short-term plan, and here is our long-term plan, and making sure that we’re all on the same roadmap.  

I think that’s really important in terms of empowering the patients. The other thing that is important is that the patients should feel comfortable asking questions, because we’re not expecting our patients to be experts in leukemia. We’re expecting our patients to be the patients. I think of us, in terms of the clinicians, as being sherpas. We’re guiding people through this process, but the reality is they’re doing all the work. We’re just the guides, and so it’s important as guides that we make sure all these questions are answered, all of the information is given to the patient, and that the patient asks for that information.  

The other thing that is important, that is a little overlooked, is taking care of the caregivers as well. It’s very difficult to be a patient, but it’s also difficult to take care of a loved one or a friend during this time. So, it’s important that the caregivers have an adequate understanding as well about what’s going on, and what we expect to be coming forward in the next days and weeks so that they can plan for these processes as well.  

Distinguishing AML Symptoms and Side Effects | Why Communication Is Essential

 

How can patients determine if they are experiencing AML symptoms or side effects of treatment? AML expert Dr. Eric Winer underscores the importance of open communication with the healthcare team for timely, effective care, and better outcomes.  

Dr. Eric S. Winer is Assistant Professor of Medicine at Harvard Medical School and Clinical Director of Adult Leukemia at Dana-Farber Cancer Institute. Learn more about Dr. Winer.
 

Related Resources:

Expert Perspective | The Value of Empowering AML Patients and Care Partners

Expert Perspective | The Value of Empowering AML Patients and Care Partners

Expert Advice | How to Elevate Your AML Care and Treatment

Expert Advice | How to Elevate Your AML Care and Treatment

Advice for Managing Emotions Around AML

Advice for Managing Emotions Around AML

Transcript: 

Katherine Banwell:

It may be difficult to distinguish disease symptoms from treatment side effects. What advice do you have for patients who are experiencing any issues that stem from their AML? Why is communication important? 

Dr. Eric Winer:

When I speak to my patients, I say to them, your job is to tell me everything that is going on. My and my team’s job is to figure out what’s important and what’s not because that’s what we’re trained to do. I think that brings up two aspects. One is the importance of openness and honesty, because we can’t treat a problem if we don’t know there is a problem. We have a plethora of drugs that we can use for different symptoms, but if we don’t know the symptoms, we can’t treat them. A perfect example is if somebody is nauseated, we can’t tell by looking at them if they’re nauseated.  

We can tell when they’re vomiting and at that point, it’s too late, but if we know ahead of time they’re nauseated, then we can actually give a number of different treatments. What I say is it’s not just telling me, it’s telling people on my team as well, because it’s important to have an entire team involved in the care. So, for example, at Dana-Farber, we don’t just have a doctor-patient relationship. We have a doctor. We have a nurse practitioner. We have a physician’s assistant. We have nursing staff. We have social workers, care coordinators. It’s really a gigantic team effort, all working to try to make the best outcome and best situation for the patients. 

Expert Advice | How to Elevate Your AML Care and Treatment

 
 
How can patients elevate their AML care and treatment? Dr. Eric Winer from Dana-Farber Cancer Institute emphasizes the importance of actively participating in the care journey, staying informed about treatment plans, and seeking a second opinion.
 
Dr. Eric S. Winer is Assistant Professor of Medicine at Harvard Medical School and Clinical Director of Adult Leukemia at Dana-Farber Cancer Institute. Learn more about Dr. Winer.
 

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Expert Perspective | The Value of Empowering AML Patients and Care Partners

Expert Perspective | The Value of Empowering AML Patients and Care Partners

AML Treatment Planning | Key Questions to Ask You Doctor

AML Treatment Planning | Key Questions to Ask Your Doctor

AML Care Essentials | Health Literacy and Recommended Resources

AML Care Essentials | Health Literacy and Recommended Resources 

Transcript: 

Katherine Banwell:

This interview is part of PEN’s Elevate series, which encourages patients to take an active role in their care to improve outcomes. What advice do you have for AML patients who are seeking to elevate their care?  

Dr. Eric Winer:

I think it’s important for people to be an active participant in this care. While we recognize that not everyone has medical expertise when they are going through this, it’s important that they are informed that they would like to be informed. It’s important that they have a full understanding of what’s going on in terms of the treatment, the plan, the short-term plan, and the long-term plan. 

So, there is a lot of information that needed to be digested. What’s important to note is that it doesn’t all have to be digested at that very moment at the time of diagnosis. These are processes. What I tell people is that this is not going to be your only opportunity to talk and ask questions. This is something that we’re going to be going through and doing this journey together. So, I think it’s important that they become an active participant in that journey, not just with themselves but also with whoever their caregiver is, and whoever is important to them that’s going to be going through this journey as well. 

Katherine Banwell:

I understand that some AML cases require treatment shortly after diagnosis. Is there room for a second opinion, and if so, what are the benefits? 

Dr. Eric Winer:

So, there often is room for a second opinion. There are times, quite honestly, like you said, where patients have a really acute problem when they come in, along with the diagnosis, or that the diagnosis has gotten to a point where we need to initiate therapy as an inpatient, urgently. That is becoming less common. It used to be, when I started doing this, that if you had a diagnosis of AML you were admitted to the hospital, and you stayed there until you completed your first round of therapy. That is not the case now.  

Generally, what we’ve learned is that there are studies that show you can actually delay therapy for a period of time in order to make sure that other things are established. Getting a second opinion is very important, particularly as a tertiary care center where physicians specialize in these types of diseases. And so, I think it’s very important to get expert opinions, not just in terms of how to treat the disease but also diagnostically, and to make sure the correct tests are run, the correct molecular studies are run, in order to figure out exactly what would be the best treatment for your individual version of AML. 

AML Treatment Planning | Key Questions to Ask Your Doctor

 
What key questions should patients ask about their AML treatment plan? Dr. Daniel Pollyea provides key advice and emphasizes the importance of sharing symptoms, while also highlighting the critical role of a care partner for support and advocacy in AML care.
 
Dr. Daniel Pollyea is Clinical Director of Leukemia Services in the Division of Medical Oncology, Hematologic Malignancies and Blood and Marrow Transplant at University of Colorado Cancer Center. Learn more about Dr. Pollyea.
 
 

Related Resources:

How Is an AML Treatment Plan Determine?

How Is an AML Treatment Plan Determined?

AML Treatment | Understanding Induction and Consolidation Therapy

AML Treatment | Understanding Induction and Consolidation Therapy

An Overview of Current AML Treatment Types

An Overview of Current AML Treatment Types

Transcript: 

Katherine Banwell:

Dr. Pollyea, when choosing a therapy what questions should patients be asking their healthcare team about a treatment plan? 

Dr. Daniel Pollyea:

So, at the time of diagnosis I think it’s a reasonable question to say, “Is my disease amenable to a cure? Can I be potentially cured?” and “Is this treatment part of a plan for a cure?” If that is possible, then I would want to be walked through the steps that that’s going to executed. And if it’s not possible for me to be cured, then I would like to discuss what is the treatment plan that could potentially give me the longest duration of a remission and the best quality of life. And so, that’s the conversation that I think is important to have.  

And then, everything that we discuss comes into play there; an individual’s sort of appropriateness for intensive chemotherapy versus less intensive regimens, and also the disease biology and what that maybe make them a candidate for.  

Katherine Banwell:

Are there certain symptoms or side effects a patient should share with their care team?  

Dr. Daniel Pollyea:

Yeah. So, we have a very, very sort liberal request that really anything, it should be shared. We have a 24/7 number to call with one of us on-call at all times. So, it’s very difficult for a patient to kind of be able to appreciate, when they’re going through such dramatic changes, “Hey, is this expected or not?” So, we really emphasize oversharing concerns about symptoms.  

All these drugs have very different side effect profiles, and some of them are common and some of them are less common. The disease itself can cause symptoms and clinical issues. So, instead of really trying to educate yourself in an impossible way on what could be or is not related, it’s better just to ask.  

Katherine Banwell:

What is the role of a care partner when someone is in active treatment? 

Dr. Daniel Pollyea:

Having a care partner is crucial. This is physically and mentally extraordinarily stressful on the body and on the mind. Having that support person for those purposes is really important. Having that person be an advocate for a patient to ask those questions that may not be getting asked, to reframe questions to get the best answers is really, really important.  

And then, there’s the more mundane things; just getting patients to their appointments and kind of keeping their morale up and those things. So, there’s data and research on this that patients with caregivers, they have better outcomes. When it comes to a transplant, a caregiver is not an option. You must have a caregiver. And the importance of that will be sort of relayed to you in the context of a discussion about a transplant. But a caregiver in the setting of a transplant is so important that it is a requirement to even be considered for that.   

AML Care Essentials | Health Literacy and Recommended Resources

 

How can patients learn about acute myeloid leukemia (AML)? Dr. Daniel Pollyea defines AML, how the condition develops, and highlights the importance of health literacy. Dr. Pollyea also recommends resources like the Leukemia & Lymphoma Society for learning about AML and shares key questions to ask your doctor.

Dr. Daniel Pollyea is Clinical Director of Leukemia Services in the Division of Medical Oncology, Hematologic Malignancies and Blood and Marrow Transplant at University of Colorado Cancer Center. Learn more about Dr. Pollyea.
 

 

Related Resources:

How Is an AML Treatment Plan Determine?

How Is an AML Treatment Plan Determined?

An Overview of Current AML Treatment Types

An Overview of Current AML Treatment Types

AML Treatment Planning | Key Questions to Ask You Doctor

AML Treatment Planning | Key Questions to Ask You Doctor

Transcript: 

Dr. Daniel Pollyea:

AML, acute myeloid leukemia, it’s a type of a cancer.  You can think of it as a cancer of the bone marrow, and it’s the likely result of several abnormalities, or sometimes I call them mistakes that can occur in stem cells or a stem cell in the bone marrow. And those mistakes that occur, most times, we don’t understand why they happen.

In most cases, they’re completely out of a person’s control. This isn’t something that comes on because it runs in a family in most cases, or because of something somebody did or didn’t do. These appear to be pretty random events that occur. But these mutations that occur in these sort of stem cells in the bone marrow cause a cell to become a cancer cell.  

And over a course of a variable amount of time, these can evolve and develop into this condition, AML. 

Katherine Banwell:

Okay, thank you for that. Health literacy, which is defined by the ability to find, understand, and use information for health-related decisions, is essential. Would you expand on the term “health literacy” and why it’s important to accessing quality AML care? 

Dr. Daniel Pollyea:

Yeah. So, I think health literacy in our field is a challenge, because these are acute conditions that come on oftentimes very quickly. And these are not diseases that are top of mind. Most people don’t know somebody who’s had this. They’re not common; only about 30,000 people every year in the United States will have AML. So, it’s very hard to have any sort of background in this.  

And for most patients because of the pace at which this disease occurs, it can be very difficult to sort of read up on it before meeting with a provider or an expert or a specialist. So, there’s a lot of challenges or barriers to health literacy. But like anything, the more a person knows, the more sort of empowered they can be, the more ability they have to ask questions and seek care at sort of the optimal place.  

What I find often is that health literacy is best harnessed by a patient’s team; so, in other words, their support system, their family and friends. Because it’s so much to deal with in such rapid succession, to get this diagnosis and to usually be feeling very poorly. To also be expected to sort of have read the most relevant literature and come armed with that information is often too much at the beginning.  

So, in the beginning, I think it’s best to leave that to your support system, and then as time goes on and as you start treatment, get comfortable, health literacy in our field, it becomes a more prevalent issue. And I think that when patients learn the most about how the field has evolved and where we are, the better that they can potentially do. 

Katherine Banwell:

Well, that leads us perfectly into my next question. What resources do you suggest for boosting knowledge about AML? 

Dr. Daniel Pollyea:

AML is like so many fields in medicine, but probably more so, moving so quickly that sort of the usual Google search is not going to, in most cases, bring up the most important, the most relevant information.  

So, I think that there are some organizations out there that do a really good job of educating patients. The Leukemia & Lymphoma Society is one. They have a good website.  

They have people you can contact, and they have really good information that’s available to patients and their families. That’s where I typically recommend people start. And then from there, based on our interest in education level and things like that, there can be other resources. But I think The Leukemia & Lymphoma Society’s a great place to start. 

Katherine Banwell:

Okay. Newly diagnosed patients and their care partners are often overwhelmed, as you mentioned earlier. What advice do you give them at their first appointment? 

Dr. Daniel Pollyea:

Right. So, this is a huge challenge. Anybody in the situation would be feeling like this. So, first of all, it’s sort of like, it’s okay to feel like this. It’s normal. 

It would be unnatural to not be overwhelmed with what you’re going through; that’s an important message. And then, I think there’s this period of time between diagnosis and a plan that is particularly anxiety-provoking. And so, as your doctor and their team sort of sorts through the necessary information to get a plan together, just know that that this a very anxiety-provoking time when you’re being told that you have a really significant and serious disease, and we don’t have a plan yet.

So, making sure that you sort of comfort yourself during that period, knowing that that his temporary and that is potentially the worst anxiety you will feel, I think, can be helpful. And then, from there once the plan is sort of in place and enacting it, it really is just focusing on short-term goals.  

So, instead of thinking three steps ahead and how’s the transplant going to work, in the early days, focusing on “Okay, how am I going to get into a remission?” and “How am I going to feel day-to-day? How can I feel as best I can day-to-day? What’s the best path to a remission?” And then, once you sort of meet the goal of remission, “Okay, what’s next? How are we going to cure this?” So, thinking through sort of in short bites, I think, is best. 

Katherine Banwell:

Are there other key questions that they should be asking their doctor or their healthcare team? 

Dr. Daniel Pollyea:

Yeah. Depending on the situation, this is a disease that can be cured; and so, from the first day, asking “Is that a possibility for me? Is there a curative plan for me, and what might that look like?” I think is an important question to ask from the beginning.  

Making sure you communicate your goals and your wishes, how you define quality of life, what that means to you. And in that way, that can really help inform your doctor and their team to put together a plan that sort of is most customized to you.