Listen to this audio podcast with myeloproliferative neoplasm experts Joan How, MD and Pankit Vachhani, MD as they discuss the process of shared decision-making (SDM) for the management of patients with PV or ET. They review the benefits of SDM as well as the barriers to effective SDM and offer practical guidance based on their personal experiences.
In this episode, hear Joan How, MD and Pankit Vachhani, MD share their insights on the importance of shared decision-making (SDM) for patients with polycythemia vera (PV) or essential thrombocythemia (ET) including:
Program faculty:
Joan How, MD
Scientific and Medical Consultant
Clinical Chief of Hematology
Brigham and Women's Faulkner Hospital
Associate Physician
Brigham and Women's Hospital
Assistant Professor in Medicine
Harvard Medical School
Boston, Massachusetts
Pankit Vachhani, MD
Associate Professor of Medicine
Division of Hematology and Oncology
University of Alabama at Birmingham
O’Neal Comprehensive Cancer Center at the UAB
Birmingham, Alabama
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Link to program page:
https://bit.ly/3YQKlHb
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This transcript was automatically generated from the audio recording and may contain inaccuracies, including errors or typographical mistakes.
Dr. How: Hi. My name is Dr. Joan How. I am a Hematologist at Brigham and Women's Hospital. I am an Assistant Professor of Medicine at Harvard Medical School and also the Chief of Hematology at Brigham and Women's Faulkner Hospital, and I have an interest in myeloproliferative neoplasms.
Dr. Vachhani: Thank you, Dr. How. I am Pankit Vachhani, Leukemia Physician at University of Alabama at Birmingham. I have been here for eight years. I focus on clinical trials in MPNs and systemic mastocytosis. We have a large MPN patient population here. That has been my clinical and research interest. Delighted to join you, Dr. How.
Shared Decision Making in PV/ET
Our topic for today's conversation is Shared Decision Making in PV and ET and perhaps MPN in general, but PV and ET especially. Maybe if you can get us started off, Dr. How, by telling us a little bit about the process of shared decision-making, and maybe share an example from your clinic.
Dr. How: Thanks so much. It is great to be here. I think shared decision-making is important in PV and ET, just because there is a lot of gray area and how we treat patients. It is important to build rapport and have patients feel like they are part of their medical care.
Usually, for the first meeting with PV and ET patients, I give just a very broad overview.
I call it my spiel of what MPNs are and what PV and ET are, and the disease pathophysiology, what complications we are concerned about, and how we mitigate the risks for these complications. Of course, I always tailor it to the level of medical literacy and how much patients want to know. I do think it is important to give some overview, because ultimately, this is going to provide context for all my recommendations.
Then once I give the overview that provides the rationale for what I would recommend in terms of diagnostics and treatments. I usually give pros and cons for different treatment options or diagnostic options. If there is a clear option, I will probably emphasize more what I recommend, and if things are less clear, I am very straightforward about that and I take into account what patients might value.
A very easy example that comes up often in the first meeting is a diagnostic bone marrow biopsy, for instance. It is important to provide a little context because there is some practice variation on whether or not PV or ET patients get bone marrow biopsies. There is many cases where I am seeing patients as a second opinion, and their first provider, for instance, did not recommend a bone marrow biopsy.
It is important not to cast that as, “Oh, that is something wrong that the first provider did. It is just something different.” This is the rationale why we would want a bone marrow biopsy, because by WHO classification criteria, it might be required. It is good to have a baseline. It is good to get some prognostic information. It is also true that very often in ET or PV, a bone marrow biopsy is unlikely to change our recommendations, from genetic testing from the blood and clinical features, laboratory features.
It is important to acknowledge that and to take into account what a patient might be anxious about, what they are afraid of, what they might tolerate. In patients who are very frail or very elderly, for instance, I often say it is reasonable not to do a bone marrow biopsy right now.
Even this relatively early and straightforward decision, it is helpful to provide a little bit more context instead of just saying, “Oh, we do not need to do a bone marrow biopsy or, oh, we should do a bone marrow biopsy.” I think that also builds trust early on, because this is a chronic condition and you are going to have a long relationship with this patient, hopefully.
I think patients want to feel like they are being heard and that they can trust their physician with any decision that comes down the road. That is one early example, and I am sure there is many others.
Examples of Shared Decision Making
Dr. Vachhani, how you approach shared decision making in your clinic and some examples of that.
Dr. Vachhani: I really liked your description of how you do it in the clinic, and you actually touched upon a few benefits. Let me also share some benefits of shared decision-making, and then maybe even share an example or two.
Much like you, I like to discuss things with my patients rather than just tell them that, “Hey, this is a diagnosis and this is the treatment that you need.” That is not the best way of practicing because then patients do not know what they have or what the long-term picture is. The more educated a patient is about their condition, the better the outcomes.
Just to expand a little bit more on some of the benefits, I think first and foremost, it is a better alignment of care where we share the evidence with the patients. They know what the evidence is. They know what to expect out of it then. In many ways, it helps to calibrate some of their expectations.
There is also increased confidence and satisfaction that they have been addressed, not just their disease, but the patients have been addressed in their entirety. Of course, with that comes more satisfaction. As one can imagine, if a patient is more educated and more aware about their condition and their treatments, and what their treatments may lead to, both in terms of benefits and side effects, then they may also have a better treatment adherence.
Now, to give an example or two, you mentioned this very important point about bone marrow biopsy, and you are quite right. In fact, if you asked some of our other colleagues, many of us may have different opinions on bone marrow biopsies ourselves. The diagnostic criteria suggest doing a bone marrow biopsy.
Then, for PV, for example, it says you could omit a bone marrow biopsy.
Then there is the point of prognostic value versus an actual treatment decision changing value of doing a bone marrow biopsy. That was a great example, I thought.
Let us take a different example. Let us say in terms of treatment goals for PV, for example, hematocrit less than 45% is recommended for almost all of our PV patients unless there is a huge contraindication. If you go around and ask, there are some patients who say that they have better outcomes or symptom management when the hematocrit is less than 42%, women especially. It could even be a man who says that maybe their symptoms are better controlled when the hematocrit is less than 42.
Then there is also the point about white blood cell counts being controlled to less than 10 or less than 11.
There is also the component about platelets, both in PV and in ET. We do not fully understand where we should be bringing the platelet counts down to. We generally say less than 400 or less than 450, but we do not have a lot of evidence that supports that.
I think sharing this information with the patients and adjusting some of our treatment goals, for example, the hematocrit goal of 42%, individualized for a given patient, even though for the vast majority of our patients it may be 45%. I think that is one value that could come out of
If we have shared decision-making and we know what the goals are, it is much easier to manage. People will stick to it. In diabetes, for example, I do not think anyone will doubt that we should try to bring the hemoglobin A1c around 7% or less.
Everyone knows about it now. Patients know about it. Community physician knows about it. Academic physician knows about it. Endocrinologist is also on the same board. We should try to get to that same concept even in the management of MPN patients.
Just to continue on some of the additional benefits, I think shared decision-making decreases anxiety. There is less conflict in terms of, “Oh, I heard so, and so thing from one website versus one physician versus you telling me something different versus some other physician from your own practice told me something different.”
If the patients know why we are saying what we are saying, it leads to deeper understanding. Again, less anxiety and conflicts in that regards.
Now why is this so much more important for MPNs? In many ways, shared decision-making should be the thing for every condition we treat from A to Z. We should do that. In MPNs especially, it is very important because we are dealing sometimes with very complex choices. It is not just hydroxyurea versus interferon versus clinical trial versus JAK inhibitor, but then there is also allogeneic stem cell transplant and all of the other pros and cons of all of these different treatment options.
Many of these are complex choices. I do not know what choice I would make about some of these if I had to make the choice right this second. How would our patients make those? I think sharing again and having a conversation with our patients is important.
The second is some of these are very heterogeneous diseases. They may have a shared pathway hyperactivation, the JAK-STAT pathway, but the disease is present in a very heterogeneous fashion. One individual may be very asymptomatic, another one could be very symptomatic. One may not have the white count issues, another one may have it. Therein lies our goal, which is to teach our patients on what their disease is and manage them in a way that they understand and they like it as well.
Then, of course, there is also the uncertainty about some of our treatments. Treatments could go really well, but they could also have a lot of potential downsides.
Last but not the least, I think it is very important to talk about all the other things that we should be managing for every one of us, including ourselves, which is better nutrition, engaging in physical activities, good optimistic outlook. To me, one of the most important points, which is good sleep. We underestimate some of these things. Many of these things, like for example, physical activity and nutrition, have been shown to have benefits in MPN patients. If only these could be in the form of a pill, we could have blockbuster drugs. Very important to share these usual things which are applicable for everyone.
Dr. How: I think you bring up really good points. What is often hard and why shared decision making is so important in PV and ET, and MPNs in general, is that it is very nuanced. It is not like, oh, somebody comes in with cellulitis, well, you treat them with antibiotics, and we are going to do like a cephalosporin. If you are allergic , then we are going to do something else. That is very straightforward.
There is an algorithm, whereas in MPNs and PV and ET, you are right. For instance, with platelets, we do not really know how aggressive we need to be with platelets and what our platelet goal is. It is helpful to be upfront about it in the beginning, because it might get to a point, where, if you push a drug too much, they become too anemic. Then we say, “Okay, we will just let your platelets be around 600 or something it is not normal.”
Then patients can easily get confused because they say, “Well, I thought that we want our counts to be normal, and now my counts are not normal anymore. What are you doing?” If you are upfront in the beginning about it to say, “Well, these are our goals of therapy. Our main goals is to reduce your risk of thrombosis, for instance.” We have the most data, for instance, for controlling your hematocrit and having a hematocrit of less than 45%. We have less data for platelets, and so we may be less aggressive with platelets just to anticipate common scenarios. That I think lessens patient confusion and builds rapport and trust. Again, as you said, adherence.
I think it also has to be individualized to each patient because values are also very different. Even just the decision to start cytoreduction a patient who is 60 and turns 61 and suddenly becomes low risk to high risk, obviously, we know nothing magical happens on your birthday, and suddenly you are not a different patient where management has to change drastically.
These big transitions can be difficult for patients who may be used to being on observation. Then suddenly we are talking about adding new drugs, and so explaining, again, we are looking at the patient holistically. We are looking at what other cardiovascular risks they may have, and then we look at what they value.
I have some patients who are so anxious about their blood counts. If they see their platelets very high, they message, they analyze their labs day-to-day, those patients. We say even if they are low risk, maybe it would be better if you were on something to lower your blood counts because it is causing you a lot of anxiety, and quality of life is clearly impacted by that.
Then some patients are on the other spectrum, where they just do not want to be on any medications. They want to hold off on any medications possible. They want to maximize any lifestyle treatments and things like that. It could be that if a patient is otherwise very healthy with no cardiovascular risk factors, and they were on observation, and then they turned 61, you do not have to be rigid and say, “Well, we have to start hydroxyurea. We have to start something because now you are 61 and you are high risk.” I think understanding patient values, making sure that they are heard is important.
There is also patients who do not really want to participate in shared decision making. I also have patients that get confused, and it makes them anxious to have that burden of making decisions beyond them. Patients say, “I will do whatever you recommend and I trust you.”
Sometimes for difficult decisions, that can also be stressful for physicians when they feel like all the trust is placed on them, and all the burden and any complications then is all on the physician. There are also patients who do not want to really participate as well. And for very straightforward decisions, you can make that decision, although you should always provide some context because ultimately, there is always going to be nuance, especially in this population.
Dr. Vachhani: Excellent. Indeed. I very much agree. This has to be individualized, and like you mentioned, there could also be some barriers at times.
Like for example, there may be some patient literacy issues. As you had mentioned before, some patients may just want the doctor to tell them what to do. They are very good at doing what has been told to them.
I can sympathize and understand that point. If sometimes we cannot make and pick a single answer all the time, how would they understand and pick from limited knowledge or limited data that has been shared with them? Nevertheless, it is important for us to get together and understand what an individual patient and/or family wants to do.
Dr. How: Especially in today's society, where now you could just go on ChatGPT and literally say, “I have PV. What would you recommend?” ChatGPT would say, “Would you like a response tailored to your physician that you can bring up?” Especially in today's age, there is so many resources, so we are going to have a lot of more literate patients who are aware of everything that is out there.
At the end of the day, patients do not make good physicians for themselves. It really does need to be a process where we can help explain and interpret the data, the literature, the resources that are out there, keeping in mind patient values, keeping in mind what we know and what is recommended.
Ultimately, the goal is not just the treatment decision that you are making right now, but the treatment decisions that you are going to be making a year from now, five years from now, etc., because this is a chronic condition that can also change. Sometimes, unfortunately, it can change drastically.
Building rapport and building trust is very important. Usually, this involves making sure that patients feel heard even things that may seem unrelated to the MPN it is important that we listen because PV and ET can impact a lot of different aspects of life feeling tired and feeling anxious and things like that. That can all be influenced by the MPN as well. It is important to have the patients feel valued.
Educational Resources for Patients
I was wondering, because there are so many resources out there, Dr. Vachhani, do you have any educational resources that you like to provide to your patients to help with shared decision making, or if they have any questions?
Dr. Vachhani: Absolutely. We deal with a patient population that is very much engaged with each other and wants to know more about their condition. Frequently, I found that they come in having done their homework before. Like you mentioned, they have used some of these AI tools. They have done some basic work. They have been on some social media and chatted with some patients. All of that is great.
But yes, to your point, I do like to share some resources so that they have information that has been curated, that has been gone through by experts and things that we approve and agree with.
What I do is talk with our patients and give my 15, 20 minute overview of the condition and the treatment. Beyond that, I do like to point them to a few different educational resources. I like to bucket these in a few different terms.
I will be honest, I do not always get to talking about all of these in my first visit, but these are some good valuable resources that one can use in future.
One is the patient advocacy organizations. For example, there is the MPN Research Foundation. They have a good patient information kits for those who have just been diagnosed. There is a multimedia program that they have. There is also the LLS or Leukemia Lymphoma Society, now Blood Cancer United.
They have some booklets on PV, ET, MPNs in general, also for other conditions as well. I like to frequently present that booklet so that patients can see that what they have is what is mentioned in the book, and they can relate to it and realize that they are normal, that they are going through what many others have gone through. Beyond that, there is also MPN Advocacy and Education International.
From United Kingdom, there is an MPN voice organization as well. Not to mention we both come from NCCN organizations. NCCN is a group of 33 large leading academic centers which get together and form NCCN guidelines.
NCCN has patient guidelines. One could utilize those patient guidelines, and those things are available for free by the way. Any patient could utilize that.
There is also the second term that I would call digital tools and news hub. What would fall into that? Things like PV Reporter. There is MPN Hub. There is Patient Power. These organizations and websites come up with more up to date information on PV and ET clinical trials that are masterclasses, in-depth articles, there are video interviews with many experts like yourself, for example.
Another thing that I like to use is, and perhaps even more than me, my pharmacist loves to use, is printing out UpToDate information for the patient. UpToDate has fantastic articles, patient education materials on PV, ET, also different medications.
My pharmacist also use some other material that comes out from more pharmacy-related organizations, like for example, HOPA has some patient education sheet and oral chemotherapy education sheets. These talk about what to expect with different drugs, how to take it, when to take it, what drug-drug interactions there may be, in a short form, maybe in a page or two.
Many of these are made in collaboration with NCODA and ONS, which is Oncology Nursing Society. They also have a lot of information about patient assistance programs. There are some different toolkits available there as well.
Then the third term that I would like to talk about is the support and connection that patients can have with each other.
Now, obviously, many of our patients have been on social media, and they tell me there are fantastic support groups from what I understand. There is a cancer support community called MyLifeLine. There are various Facebook support groups. There is also MPN-NET.
That is a very long-standing online support group for patients where they interact with each other, share their opinions with each other from what I understand.
We should not forget some of the other resources. For example, our own nurse navigators, our own nurses, social workers, they too can share a lot of different information and perhaps information that we share, but in a different light with additional angles and knowledge. Important to use our own resources as well.
I think something that we could do more and I could do more as well is utilize some of our tools, like, for example, symptom assessment tools.
These are freely downloadable and usable. Patients could track it. Patients could also have their own journal diary where they jot down their symptoms, side effects, good things that have happened.
One, it is just therapeutic. But two, also it is a good way to keep a log of how things are going, which could then be brought into a physician room at a future visit. Again, that would be of help in shared decision-making.
Let us also then not forget some of the lifestyle guides. We talked about sleep, nutrition, activity. There is also the importance of skin care in patients with PV, ET. There are lots of skin malignancies that happen partly from sun exposure but also partly from some of our medications, which are immunosuppressants.
Important to talk about hydration, overall nutrition and movement activities, and also tobacco cessation. Very important to state that because that is a high cardiovascular risk factor for some of the things that we are trying to prevent, thrombosis, for example.
Dr. How: That is great. I agree that it can be hard to find time to give all these resources, especially because there is a wealth of resources. Just like you, I can do better about providing these resources. I also admit that I tend to only give resources when patients ask me explicitly, especially in the first visit, where you are getting to know the patient and introducing the disease and things like that, there is often just not enough time.
That is one of the barriers to shared decision-making is there is limited time to really go through everything, and especially in something within MPNs, there is a lot of nuance, there is a lot of unclear data where you just have a lot more to unpack.
I think, though, just being conscious, especially in the first visit, where there is generally more time for consultation, and you are getting to know somebody, to really take some time to step away from the computer, make eye contact, and really just explain things. I like to write things down as I am explaining things, and I give it to the patient when they leave. Definitely, we all have packed clinic schedules, and it can be challenging to find time to explain these things and to make patients aware of all the resources that are available.
Barriers to Shared Decision Making
Then other barriers to shared decision-making. Obviously, you can see patients who have varying degrees of health literacy. Some patients are very educated even if they are not in the medical field, they have taken a lot of time to research the MPN field and often come to the visit with a treatment in mind, like they want to do this clinical trial, they want to do this drug specifically.
On the other end, you have patients who have a really hard time understanding, like what is a mutation? What are red blood cells? What are platelets? What do they do? Sometimes, for patients with low health literacy, there might be an instinct to be like, “Oh, just do this. Just do X, Y, Z.”
It might be frustrating even to try to explain things, but even patients who have lower health literacy, it is still important to try to give context, because I think patients with lower health literacy, if there is a complication, if there is a side effect or something, they might be at higher risk of stopping their treatments. If you explain, “Well, we need to do this in order to reduce the risk of having a stroke.” They are more likely to be compliant, but it can definitely be challenging with patients with lower health literacy.
It can also be challenging patients who are very health literate because they might have very strong opinions of what they want to do. Just because they want to do something does not mean it is necessarily the right thing. I think it goes both ways.
Also, dealing with family members and caregivers can be challenging, especially there are some cultures where family members take on all the responsibility for their family member. They might not want to divulge information to the family member because they do not want to scare them. That is very different from how we approach medicine in Western cultures, and so shared decision-making may sometimes seem like it is all with the caregiver.
That can definitely be a challenging situation as well. That is not even specific to MPNs.
In general, the bottom line is that shared decision-making is a valuable thing, particularly within MPNs, and it is something that we should all strive for. It is going to look different for every patient. As long as providers are conscious of the goal, which is to have patients feel like they are heard and that they have a say in their care, that is what we should strive for.
Dr. Vachhani: Very much agree. I could not agree more. As important as shared decision-making is, there are some barriers. As long as we all work together to overcome the majority of these, I think we would lead to good outcomes for our patients.
Dr. How: We can all agree that shared decision-making is very important in taking care of our patients with PV and ET. Dr. Vachhani, any concluding remarks about shared decision making in our patients and all the providers who take care of patients with MPNs and PV, and ET?
Dr. Vachhani: Sure. Thank you, Dr. How. I think the bulk of our conversation was related to shared decision-making between physicians and patients. Yes, that is a very important part of what we do.
Also, I just wanted to expand on what shared decision-making could be or has the potential to be, which is that it should be a shared decision-making with not just the patient and the physician, like let us say you or I but also with our advanced practice providers, NPs, PAs, and also with our pharmacists.
They bring a lot of knowledge to the table. They are very well-educated individuals as well. They can sometimes do things that we cannot do so well, with regards to, for example, community physicians, I think they play a very crucial role. They are frequently the individuals who manage some of our patients even more than we do. They have perhaps contributed to the original diagnosis in many ways. They see the patients more. They know more about their individual needs or capabilities.
Having a line of connection with them, where we work together towards the benefit of our patient, pick our treatment options together, and know what the expectations are from some of our medications would be a great thing.
With regards to advanced practice providers, I think many of us alternate visits with them. This can only work when our APPs are educated on what to expect in MPN patients. Then only can we have a true shared decision-making.
To that goal, I would say I frequently put items which are very important for an individual MPN management in my notes so that the person who is looking at it after me, let us say an NP or a PA, or for that matter, even a nurse or a pharmacist knows what are the goals for that individual patient and what adverse events have happened or could happen, or what the individual patient is at high risk for things to happen.
To that point, again, pharmacists are very important players in this whole journey. They have information that we do not have. They emphasize information that we do not emphasize so much. That is actually crucial information on drug-drug interactions, when to take the drug, how to take the drug, how to monitor for these. Many a times our pharmacists are checking on patients behind the scenes, even between the visits. It is important for them to be aware and fully be part of this journey as well.
That is all that I wanted to say about shared decision-making beyond physicians and patients. But I truly enjoyed this conversation with you, Dr. How.
Dr. How: I as well. That is a great point because MPNs, they touch on so many different aspects of life. I am just thinking of all the providers that my patients see. You mentioned advanced practitioners and nurses and pharmacists, but also social workers, nutritionists, physical therapists, all that. I totally agree. It is a group effort. I want to just echo your sentiment that it is a collaborative effort with a community. Ultimately, I think it really does improve patient outcomes.