Beyond the Blood Counts: Patient-Centered Communication in MPN Care

Dr. Nicole Rochester:

Hello, I’m Dr. Nicole Rochester, and welcome to the Patient Empowerment Network’s Empowering Providers to Empower Patients (EPEP) podcast. In today’s conversation, we’ll explore myeloproliferative neoplasms, or MPNs, and the ongoing challenges of helping patients understand a disease that can evolve over time, often in ways that are not immediately visible, through laboratory values alone.

While some patients may be classified as, “low risk,” many continue to experience significant symptom burden and reduced quality of life. This creates a critical need for clear communication, thoughtful symptom assessment, and shared decision-making grounded in both clinical insight and patient experience.

Joining us today is Dr. Gabriela Hobbs, Clinical Director of the Leukemia Service at Massachusetts General Hospital, an Associate Professor of Medicine at Harvard Medical School in Boston, Massachusetts.

Gabby, thank you so much for joining this program today.

Dr. Gabriela Hobbs:

Thank you, so happy to be here.

Dr. Nicole Rochester:

So, Gabby, myeloproliferative neoplasms, as we know, are chronic, ever-changing diseases. And patients often struggle to understand how their condition may change over time.

At the same time, some patients, especially those labeled low-risk, may continue to experience significant symptom burden, and reduced quality of life, despite the fact that their laboratory values may appear stable.

So, from your perspective, how can providers help patients understand the longitudinal nature of MPNs, validate symptom burden, and communicate risk and uncertainty in ways that support shared decision-making without creating unnecessary fear?

Dr. Gabriela Hobbs:

Nicole, this is such an important question, and I’m so glad that we are discussing that. You know, oftentimes, many patients, especially those, like you mentioned, that are low-risk often times struggle with significant anxiety. You know, they live with a disease that they know can turn into something else, and so I think that that can be really difficult. And in addition to that, you know, their blood counts may not be that abnormal, and they may still have a lot of symptoms.

And so I think, as providers, I think, first of all, having an awareness of the fact that patients, irrespective of their disease risk, can have symptoms. And so, first is just asking patients, you know, do you have MPN-related symptoms? And personally, in clinic,

I utilize the MPN symptom assessment form. I know that it sometimes can seem burdensome to think about using a form, but sometimes it’s…it’s an easy thing to even give patients as they’re waiting for you in the waiting room. It’s a 10-point questionnaire.

I have it included as a quick phrase in my notes that can easily kind of populate and just helps me keep track of that.

So the first is, you know, recognizing that there are symptoms, asking about those symptoms. But then the other part of that is that sometimes patients don’t know what part of what they’re feeling is related to their disease, and so I think a lot of education on, there are some things that are very clearly MPN-related, like itching, for example, or night sweats.

But there are some things that are not, and there’s a lot of anxiety and depression, I think especially in this low-risk population, and so helping to educate patients on what to expect of their disease, reassure them about their disease, because many times what’s happening is not disease progression, it’s just anxiety about that.

And also, relying on and enlisting, you know, other providers that can be helpful, like primary care, like social work, like therapists, those kinds of things, I think, it is very, very helpful. So, awareness about how they’re feeling and education to the patient, I think, is really important.

Dr. Nicole Rochester:

Thank you so much for sharing that, Gabby. I’m really touched by this idea of anxiety and it being higher in patients who are classified as low-risk. And one of the things that it made me think about is this idea of medical gaslighting, where individuals are sometimes dismissed, or their concerns are minimized, and, you know, because they may be on paper, their labs look a certain way, and so for you to share that, in fact, the lower-risk patients sometimes have more anxiety, and that they also can have valid symptoms, I think, is so important.

I imagine that these types of communications can be challenging, based on certain characteristics of the patients, and one in particular I’m thinking about is low health literacy. We know that a vast majority of patients have low health literacy, regardless of their educational background.

How do you tailor these conversations based on a patient’s health literacy?

Dr. Gabriela Hobbs:

Yeah, what a great question, Nicole. I can’t tell you how often I’ll see a patient that has had a diagnosis of whether it be low-risk ET or low-risk polycythemia vera for years, and they come to me for a variety of reasons, and don’t actually know that they have a diagnosis of an MPN, you know? All they know from their provider is that there was something wrong with their blood.

And I think that that really does speak to the fact that, health literacy really does impact what patients understand about their disease, and in our very busy practices, unfortunately, sometimes providers just don’t have the time necessary to explain these concepts, but I do…I mean, at least in my practice, I’m a big believer in spending the time to explain to the patient what it means to have one of these conditions in a way that a patient can understand.

And it has to happen also over the course of maybe more than one visit. I mean, I think even the concept of understanding what it means to have a genetic mutation that is only in the blood and not in the rest of the body is not a straightforward concept, and so, for my new patients, being able to spend a lot of time with the basic concepts of education makes a huge difference.

You know, that initial investment of time I think ends up really helping long-term with the patients feeling empowered because they know what they have, they feel empowered because they understand what to expect, and then that also helps what we were talking about in terms of anxiety, but I think the key there is time, you know. So I think as a specialist, I sometimes have the luxury of that time to sit and explain that to the patients.

And then more specifically, because that was more of a general answer to talk about the health literacy piece, I think.

For all my patients, but specifically those that I’m concerned about their health literacy, I think enlisting family members to talk to the patient in a way that really resonates with that patient, I think is really important.

So I may think that I’m saying something to the patient that’s clear. And then, you know, a spouse will say something, and the patient’s like, oh, okay. So, you know, sometimes we just need a little bit of help, so I think that getting that help from people that are close to the patient, I think, is also really important.

Dr. Nicole Rochester:

I really love that. As you’re talking about bringing in the families and having them talk about it in a way the patient understands, that also speaks to their cultural backgrounds.

And perhaps even the language that they speak, and the importance of communicating to our patients who may represent diverse backgrounds.

Are there other techniques that you use specifically, in terms of patients who may have cultural backgrounds that may make it difficult for them to understand an MPN diagnosis?

Dr. Gabriela Hobbs:

It really, is about having the families and really trying to get to understand patients over time, and I’m…and I’ll give you an example, so…you know, I’m a Spanish speaker, and when I’m speaking to patients in Spanish, I understand that there are certain ways of expressing, you know, psychosomatic complaints, for example, that make a lot of sense to me as a Spanish speaker, but I’ve for sure had, you know, patients of other backgrounds where their psychosomatic complaints and their way of expressing anxiety or depression may be really different, actually.

And so, this is not something where I think you can really accomplish everything in one visit. I think the longitudinal relationship really makes a difference.

So that, you know, again, enlisting that family member to be like, okay, explain to me a little bit more about the symptom and try to put it in the context of who that patient is, and also the society that they live in, and where they come from, because really, I think it’s really hard to generalize that patients are all going to experience the symptoms in the same…in the same way.

And for diseases like MPNs that are so symptom-driven, it’s so important to try to understand if what the patient is experiencing is a symptom related to their MPN versus perhaps, you know, there’s so much anxiety in this population versus and you don’t want to treat that anxiety as if it’s part of their MPN, you know, so really spending the time to really be able to understand where that patient is coming from, I think really pays dividends.

Dr. Nicole Rochester:

I love…each time you’ve talked about time, you’ve used words like investment and dividends, and I think it’s so important for healthcare providers to understand that while time is a commodity in the exam room these days, it is an investment, and there is a return on that investment, and being able to spend quality time at the beginning of the diagnosis, making sure, like you mentioned, that they understand truly pays off in the end for both the patients and their families, as well as the healthcare providers, so I really appreciate you pointing that out.

What communication pitfalls would you say may unintentionally increase fear, or confusion, or this anxiety that you’ve referenced?

Dr. Gabriela Hobbs:

So one generic thing, and then one specific thing, I think, assuming that a patient understands what something means and just kind of brushing past it, or using jargon, I think that definitely can increase a lot of fear and confusion. And so, in the context of an MPN, you know, being like, well, obviously your JAK2 mutation or the VAF, or something, you know, using things that are just not obvious, definitely can be hard.

So again, talking about time is explaining, you know, you have this condition, and it’s associated with this mutation, and the mutation is only in your blood. I think that all those, you know, stepwise explanation is very helpful.

One of the things that specifically, I think, really increases fear or confusion is the way the data is reported now to patients. So oftentimes, I’ll see a patient will maybe obtain a bone marrow biopsy. But oftentimes obtain genetic testing, and the patient gets released that information. At the same time that I do, and, of course, that patient only has one test to look at, and I have several.

And so many times I’ll get, just before this conversation, I had an email from a patient that said can you help me explain all of these different things? Because the genetic tests don’t just say one thing, they have all sorts of jargon and things that sound really scary.

And so that definitely increases fear and confusion. And so, to go back to how to communicate to avoid that to some degree is, let the patient know you’re going to get these results. Set up that visit to discuss those results and let them know that they aren’t expected to be able to interpret those results without you.

It happens all the time, that patients just get released too much information that even for the most educated of patients, even for physicians sometimes, I feel like understanding some of those genetic results can be really complicated.

So maybe preempting those things can sometimes be helpful, but not always.

Dr. Nicole Rochester:

Yeah, that’s a really important issue. You know, we want patients to have access to their information, but the other side of that is just what you shared. They’re getting it sometimes even before, the physician receives it, or certainly, like you said, before you’ve had a chance to review it, so…those are great tips in terms of preparing the patient for the fact that they’re going to have results drop into their patient portal, and then proactively setting up that appointment so that they know that there’s an opportunity to discuss those results is incredibly important.

Well, thank you so much, Gabby. This brings us to the end of this Patient Empowerment Network EPEP podcast.

Thank you for your valuable perspectives and insights. We hope today’s podcast helps providers treating patients and families facing an MPN to feel even more equipped to empower their patients in their MPN journey.

I’m Nicole Rochester, thanks for listening.