In this EPEP program, Dr. Akriti Jain of Cleveland Clinic and Nurse Practitioner Kimberly Smith of Duke Health discuss overcoming practice barriers, navigating emerging challenges, and implementing strategies to close gaps in patient-centered myeloproliferative neoplasm (MPN) care.
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Dr. Nicole Rochester:
Welcome to this Empowering Providers to Empower Patients or EPEP Program. My name is Dr. Nicole Rochester, Founder and CEO of Your GPS Doc. EPEP is a Patient Empowerment Network program that serves as a secure space for healthcare providers to learn techniques for improving physician-patient communication and to overcome practice barriers.
In this healthcare provider roundtable, we are discussing advancing practice and enhancing myeloproliferative neoplasm care. How can we overcome current challenges to enhance the management and outcomes of myelofibrosis, polycythemia vera, and essential thrombocythemia? What innovative practices are transforming the management of myeloproliferative neoplasms to improve patient outcomes?
Our conversation will look at gaps in the field and solutions to enhance patient-centric MPN care for improved patient outcomes. We’re going to discuss identifying practice barriers to patient-centered care, navigating emerging challenges and opportunities in management and effective strategies for closing gaps in MPN care. It is my privilege to be joined by Ms. Kimberly Smith of Duke Health. Ms. Smith is a nurse practitioner who provides security and compassion that patients and families need when they get a cancer diagnosis. Thank you so much for joining this EPEP program today, Ms. Smith.
Kim Smith:
Thanks for having me. It’s a pleasure to be here.
Dr. Nicole Rochester:
It is also my honor to be joined by Dr. Akriti Jain, a hematologist at Cleveland Clinic. Dr. Jain’s passion lies in understanding the needs of every patient and always prioritizing and advocating for her patients and their families. Thank you so much for joining the EPEP program, Dr. Jain.
Dr. Akriti Jain:
Thank you, Dr. Rochester. Happy to be here.
Dr. Nicole Rochester:
So I’d like to start off by talking about identifying and overcoming barriers to patient-centered care for patients and families facing a myeloproliferative neoplasm. So, Dr. Jain, I’m going to start with you. What are the most common barriers to implementing patient-centered care in the management of myeloproliferative neoplasms?
Dr. Akriti Jain:
Thank you for that question, Dr. Rochester. It’s very pertinent. As you can imagine, there can be a lot of barriers when we are trying to provide patient-centered care, especially in the management of myeloproliferative neoplasms. As you said, there are multiple myeloproliferative neoplasms, and each one of them is complex. And hence the complexity of each diagnosis, how they’re diagnosed, how their risk-stratified and how those patients are symptomatic based on whether their platelets are high or their hemoglobin is high, or they have scarring or fibrosis in their bone marrow.
Then that in itself becomes complex and can become a problem when we’re seeing these patients in the community. That’s why a lot of these patients get referrals to tertiary care centers, and not all patients can have that opportunity to go to tertiary care centers and see providers that are very knowledgeable and know what…exactly how to diagnose these myeloproliferative neoplasms.
Dr. Akriti Jain:
A lot of times it’s very team-based approach. It’s not just the clinician, but also the pathologist. So a lot of times when these patients come to us we have their bone marrow biopsies reviewed because the diagnostic criteria requires certain things in their bone marrow that helps us diagnose these problems. So not just that these MPN are variable, but also individual variability within the MPNs. So not every polycythemia vera patient presents the same way. So that becomes a problem again when providing patient-centered care, because it’s not the one-size-fits-all philosophy. Those are some of the things that I can think of.
Dr. Nicole Rochester:
Ms. Smith, I know that you share Dr. Jain’s passion with regard to really being compassionate with your patients. So I’d love to get your perspective as a nurse practitioner what are the primary barriers that you’ve witnessed to accessing effective patient-centered care?
Kimberly Smith:
I would say what I’ve experienced most is the patients actually understanding their disease process, the education piece, like making sure that educating them about their disease, giving them security that, hey, that you have a myeloproliferative neoplasm, but let’s look at it as we’re running a marathon, not a sprint. You know that we have time, you know that we can get family involved. And I think that’s a big thing with me, just try to bridge that barrier that it’s a team effort. It’s not just you. Even though treatment is individualized, it’s still a team. We are a team, so I want you to be comfortable, but I also want to be comfortable with giving you the information and that you are able to receive it. That’s one of the big barriers that I see is them being able to accept their diagnosis.
Dr. Nicole Rochester:
Wonderful. Thank you so much Ms. Smith. So, Dr. Jain, I’m going to go back to you and staying on this theme of patient-centered care. Can you talk about some of the gaps in research regarding patient-centered care in MPNs, and how can those gaps be addressed?
Dr. Akriti Jain:
Sure. So building off of what Ms. Smith was just saying, education comes, it’s very important also for research. If our patients are educated on the potential options for trials, for retrospective research, for registry research, they are more open to accepting these options for their management, for their treatment. A lot of patients might not know which phase each trial is in, and a lot of patients don’t want to be, “guinea pigs.”
So sometimes it’s important for us to educate patients that some of these trials are Phase III trials and Phase III trials eventually lead to drug approval. So a lot of the drugs we have for myeloproliferative neoplasms were not available a few years ago. So education is very important here. And lack of education within patients and then also within healthcare providers can be a big gap in getting research to the patients where it is needed.
And we’re very thankful to these patients that help us advance research and help us get these drug approvals and enroll in trials. Other important gaps are including patient-reported outcomes. As we all might know within MPNs, we have a really nice MPN symptoms score MPN-SAF, a lot of newer research trials and other research avenues are including SAFs within the trials. And so these are important things that can help us give patients the prioritized and individualized care they need.
Dr. Nicole Rochester:
Thank you so much, Dr. Jain. Ms. Smith, do you have anything to add with regard to gaps in research regarding patient-centered MPN care?
Kimberly Smith:
Yes. I agree with Dr. Jain, but also another thing that I notice, with these gaps is a lot of patients come to us with other comorbidities, and so they might not qualify for trials or they might have another associated heme malignancy that they might not be able to qualify. So it kind of puts a gap in treatment, because then we have to go with what’s already FDA-approved, and that might not be the best option for the patient at that time.
Dr. Nicole Rochester: Thank you for pointing that out. So we’ve been talking about the barriers that patients face, and I want to shift gears a little bit and focus on the healthcare provider. So, Dr. Jain, I’m going to start with you. Can you speak to some of the obstacles or barriers that healthcare providers face when treating MPN patients?
Dr. Akriti Jain:
Sure. So being a healthcare provider and doing this, I can tell you all about the barriers we face. I think going back to that team-based care, sometimes it’s easier said than done. Like I said, we need pathology input. A lot of times we need psychology input. Other times, we need cardiology input. Some of these patients are getting blood clots, vascular medicine, so team-based care and coordination within those various physicians and nurse practitioners and social workers that can sometimes become cumbersome requires lots of phone calls.
And so in a lot of places, we try to put together these teams where you have kind of like a go-to person to call when you have questions or concerns. The other thing we always are all short on is time. So it’s easier to talk about these MPN symptom scores, but when there are 10 questions to ask these patients within those 15 to 30 minute appointments though that’s another barrier sometimes that we face as physicians and as healthcare providers.
The other important, one of the other important parts is management of some of the side effects of these newer therapies. Every patient reacts differently. Every patient has different side effects that they can have. And knowing those and being able to manage them while keeping them on these therapies, which don’t only improve symptoms, but can also sometimes improve survival and improve the natural history of the disease can be difficult to overcome and handle.
Dr. Nicole Rochester:
Thank you, Dr. Jain. And what about you, Ms. Smith? Can you speak to any additional barriers that healthcare providers face?
Kimberly Smith:
Unlike Dr. Jain was saying, but one of the barriers that I see that that we face a lot is advocacy groups are great, they’re wonderful, we need them. But a lot of patients look at those groups, and they lump themselves into that group. And so I try to tell patients you are an individual. You are individual. You need individualized care. It’s wonderful to look at the advocacy groups. It’s wonderful to follow, and you get some good information, but we also have to look at you as who you are and what we are treating and your symptoms, because your symptoms may not be the symptoms that they have.
Dr. Nicole Rochester:
A really good point. And since we’ve talked about these barriers, I’d love to wrap this part of the conversation up by giving solutions. So, Dr. Jain, you mentioned a couple, you talked about having this one number for all of the how healthcare providers to call, if there are questions to kind of help to coordinate care. Are there other solutions that you or Ms. Smith can offer to start to overcome some of these barriers in care?
Dr. Akriti Jain:
Sure, yeah. In addition to the multidisciplinary team that we were discussing and having, those people that we can talk to another barrier that I didn’t talk about is a lot of prior auths and having pharmacy support to get some of these medicines that can be really expensive, right? The financial toxicity that can come with some of the medicines that we manage myeloproliferative neoplasms with is hard. So having pharmacy support is again very important.
Having that specialty pharmacy that can help us navigate how to get these medicines to patients quickly and get them in an affordable manner, I think another important part that we always come back to is education. Education of those pharmacists, of patients, of other healthcare providers helping them stay on top of what new drug approvals come through, what Phase III trials are available in the community, what the side effects of these medicines are so that they are empowered to be able to help their patients out in the community and also in tertiary care centers.
Dr. Nicole Rochester:
Wonderful. Thank you both. Well, we’re going to move on. And in this section I want to talk about some of the challenges and opportunities. So I’m going to start with you on this one. Ms. Smith, can you speak to some of the emerging challenges and opportunities in the management of myeloproliferative neoplasms?
Kimberly Smith:
Well, a lot of the world of MPNs is starting to explode, especially with myelofibrosis. We are getting all these different treatments, these trials running, things hopefully that we will have that could that could change the disease process in these patients. And one of the biggest challenges is, is that where do the patients fit at in this aspect of it? Are we going to be able to actually get patients approved for some of these things or will we have to go with the oldie, but goodie with a lot of these? We still use hydroxyurea (Hydrea) a lot in these MPNs. And so, but we have a lot of other drugs now that we can use.
But because we know that it’s tried and true, and it’s harder to get patients on some of these other drugs, we go with the oldie but goodie. So I think that’s a challenge that we…that we’ll have. And the other thing is too these drugs are expensive. So even if we can get the drug form at our institution or in the community, if we can get them for them, will they be able to afford them? And one thing I can say that I’ve noticed is a lot of the drug companies that we’ve dealt with here that they are really good about helping, is there anything that we can do to kind of help push the process to get patients assistance for these therapies? And so I think that’s one of the biggest challenges that we’ll have with treating them, just this explosion of new therapies coming.
Dr. Nicole Rochester:
And you kind of alluded to it when you spoke about hydroxyurea. So I’m going to pose this question to you, Dr. Jain, are there any unforeseen or outdated practice-related barriers or therapeutic inertia that may hinder your work in that of your colleagues?
Dr. Akriti Jain:
Yes, definitely. I echo Ms. Smith’s sentiments. I think a lot of times, things that we have already used for years and having familiarity with those treatments sometimes can lead to resistance to accepting new guidelines and treatments. And that can come from, again, not knowing the side effects that these treatments can pose, right? Not having long-term data that these drugs haven’t been, some of them are new, they haven’t been around for years, so we don’t know what they can cause in the future. And that can happen both from the healthcare provider standpoint and also from the patient standpoint. And it can be challenging. And what can help us overcome that is education.
Even though the drugs might not be approved, for example, the newest approval that came around last year was momelotinib (Ojjaara), which is a newer drug for myelofibrosis, can help treat anemia as well. After it was approved, we had patients ask us for that drug for months before we could actually prescribe it. Yes, because FDA approval and then actually being able to prescribe the drug take…it takes some time for these drugs to show up on formularies for pharmacies to start carrying them. And then going back to, even if the drug was approved last year, it doesn’t mean it’s a new drug. It’s being tested and it is being tested in trials for years now. So those are some of the things that I can think of.
Dr. Nicole Rochester:
Thank you both. So I want to talk about the Landmark study. This, as you all know, was a large scale analysis and survey of patients with myeloproliferative neoplasms as well as the healthcare providers who treat these rare chronic blood cancers. Ms. Smith, how do you feel that healthcare professionals can use the insights from the MPN Landmark study as an opportunity to improve how they communicate and interact with their patients?
Dr. Akriti Jain:
Sure, I think the most important thing that we can learn is understanding the patient perspectives and needs. It provides an in-depth analysis of what the patients get anxious about or what the patient’s symptoms are about. So if, for example, if the patients are anxious about side effects of treatment, we can be proactive in empowering our patients with that knowledge that these are the things that we need to look out for.
These are the things that you would call us for. And again, it gets us back to understanding the common challenges that our MPN patients face and then how we can help them with those challenges, those symptom management. If treatment adherence is a problem, how can we help them have a pill diary? Or if a burden is a problem, how can we help them reduce some of the medicines that they’re taking? I think it provided a really good understanding of what patients feel, how their perspectives are, and what things we can use to improve their management and provide more patient-centered care.
Dr. Nicole Rochester:
And what about you, Ms. Smith? What are your main takeaways from the Landmark study and how can healthcare providers use those results to improve the way they interact with patients?
Kimberly Smith:
My main takeaway was where the patients, where it showed on the study, where the patients were saying it was hard for them to get up out of the bed. So I’ve dealt with that with many patients. Fatigue is a true issue. And, I’ve had patients tell me they’ve golfed nine holes. I had no idea what that meant. But then they say I come in and I can only golf five holes.
I still had no idea what that meant. However, it was significant for them. And so, what I take from that study is we have to not only just ask patients, what are your symptoms? We have to actually question and dig to actually find out because what we may be looking at just off of the symptom score page, they may have something else that’s hindering their ADLs or hindering their, what they’ve done all the time in their life. And it’s changed now.
And so, I think the main thing we have to do is actually ask, educate, have them to write down symptoms, anything that happens new that happens to them, let’s write it down. Let’s go over it. Let’s talk about it. And then if it’s fatigue, we have ways we can help mitigate some of that. We collaborate with palliative care to help with symptom management. If it’s allergy symptoms, we collaborate with allergy. So there’s ways we can help you with your symptoms, but if we don’t know, we don’t know. So I think the education, I think talking to patients, like actually talking to them on their level is what that Landmark study kind of presented to all of us, healthcare providers, that what we may be looking at as symptoms may not be symptoms for the patient.
Dr. Nicole Rochester:
Absolutely. And that kind of circles back to, I think what you were talking about earlier, Dr. Jain, with regard to patient-reported outcomes. So I will say I was thrilled to see this study, and I wish that this is something that was done in all disease states. So thank you both for commenting on that. So in our final topic, we’re going to talk about strategies for closing the gaps in myeloproliferative neoplasm care. So I’m going to go to you first, Dr. Jain, can you describe the most effective strategies, including your own best practices that can address gaps in care for patients facing a myeloproliferative neoplasm?
Dr. Akriti Jain:
Yes. So again, coming back to empowering our patient and leading to that shared medical decision-making. So different patients present differently, not using that one-size-fits-all philosophy, depending on what their symptoms are, what their diagnosis is tailoring their treatment. If cytopenias or anemia is a problem, helping them battle that. And different hemoglobins can be different for different patients. So not discounting their symptoms, saying that your hemoglobin is 11, your hemoglobin’s fine, you don’t need any treatment for this right now, maybe they’re used to functioning at a 14.
So shared medical decision-making is very important, because if patients feel like they’re heard, if patients feel like they’re a part of the decision that their healthcare provider made in helping them decide what is best for them, I think that is really important. And it would lead to patients actually adhering to treatment, following up with their healthcare provider, and also better physician-patient relationship, which I think is very important in some of these chronic diseases, where these relationships last for years, right? This is one of the chronic diseases, like a lot of times we’re telling our patients, this is like high blood pressure or diabetes, we have to learn to live with it.
And so they have to be friends with their healthcare provider, otherwise they’re not going to come see you again. So I think empowering the patient, making them a part of this decision of how we’re going to treat them, how we’re going to monitor them, how often should we be doing their labs, is it feasible for them, I think are really important ways to close those gaps and help our patients.
Dr. Nicole Rochester:
Thank you so much, Dr. Jain. What about you, Ms. Smith, what thoughts do you have in terms of strategies to address the gaps in care for MPN patients?
Kimberly Smith:
I agree with Dr. Jain, but also bridging the gap between community and tertiary centers. A lot of times, we treat patients in these big centers, and then we send them out to local places to whether they need transfusions or, or to continue care because the distance for them to make it here is just too far. So I think, bridging, collaborating with the outside community hospitals and community centers, and also even the nursing staff, the nursing staff coordinating, just coordinating the care so these patients will know that they are receiving effective care, whether they are at this tertiary center or they’re at their community center, because we all are working as a team to make sure they have everything they need.
And also including the family. Families are important. That was a big thing to me. Like, I want to make sure families knew that they were a part of this team also, because a lot of times it’s the family who is having to deal with the symptom management. They’re the ones who want their family member to go somewhere with them, and they’re just too fatigued to get out, and they don’t understand it, because we’re telling them that this is a chronic disease. They should be able to do some things, but they just can’t. So I think we have to make sure we’re bridging the gap with the families also.
Dr. Nicole Rochester:
So for you, Dr. Jain, are there specific strategies or maybe one strategy that you have implemented yourself, maybe where you work, that has helped to bridge that gap between tertiary care and the community setting, as an example?
Dr. Akriti Jain:
Yeah, that’s a very good point brought up by Ms. Smith. So what I do, because a lot of the patients I see in my clinical practice are second opinions. A lot of these patients I see one time, and maybe I’ll never see them again, or maybe I’ll see them in two years from now when things have changed, and they have more questions, or their provider has more questions. So what I do is I make sure the patient has my contact number so that they can always reach out if things change.
I make sure they have that MyChart set up so that they can always message me if they need me. The next step that I always take is I call their primary oncologist. I make sure they have my cell phone number so that they can call me if things change, if they have any questions. And the third thing I always tell my patients is you can use me however you want to use me.
So, I, a lot of times, would set up virtual visits in three months or in six months. That way, even if they live hours away from us, they can see us the tertiary care center through the comfort of their home. They can get labs locally and see us. They can kind of alternate between their primary oncologist and a tertiary care center, or maybe see us once a year. It’s dependent on how much they feel makes them comfortable seeing us along with their primary oncologist who’s doing most of the heavy lifting, providing the care close to their homes.
Dr. Nicole Rochester:
And to circle back to the family part, I’m going to go back to you, Ms. Smith. Is there a strategy that you can share that you and your team implement to really engage with the family members of MPN patients?
Kimberly Smith:
Yes. So we provide educational materials to the patients. We always ask them to bring a family member with them. If they can’t bring a family member with them, I’m willing to call a family member if they need information after the visit. I always give them the contact numbers that the family member can contact me also. MyChart is a big thing. Make sure they have MyChart because the family reaches out via MyChart also.
Another thing that I do is that I try to make sure that the family also has like the educational material too, because sometimes you can give it to the patient, but they don’t share it. So if a family member comes, if I pass out information to the patient, I pass it out to the family member also. I also provide them with websites that they can use, that they can utilize. Like the Cleveland Clinic is one of them that I have them use a lot, but, but websites that they can use where they can actually look up information on these different MPNs that they may have. So I think the educational piece is the biggest thing that I do with my patients.
Dr. Nicole Rochester:
Excellent. Thank you both for that. We talked a little bit about the perception that patients have when we talked about the Landmark study a little earlier in this program. And Dr. Jain, I’m going to come to you. How did the gaps in perception or perhaps the disconnects between the patient perception and the physician or healthcare provider perception of the disease burden, how do those gaps impact overall management and treatment outcomes for MPN patients?
Dr. Akriti Jain:
Sure, Dr. Rochester. So the disconnect between the physician and patient can become really important and where that occurs is because a lot of times our low symptom burden, low-risk disease patients are being observed. And the physician might think that I don’t think this patient warrants treatment, but the perception that the patient has of their symptoms might actually be very different. And I think what comes really handy here again is that MPN symptoms score, when you ask patients to rate the symptoms from 0 to 10, but 10 being the worst, you can actually see where they lie on the spectrum.
And I do these symptoms scores on every visit, because especially if I’m starting them on treatment, it really helps to know in an objective manner that what was the number that our patient rated fatigue on at their last appointment and what that number is now. And it’s not just fatigue, but all those 10 points and then symptom score, how are their night sweats, how is their itching, are they still having problems concentrating, have they lost weight?
So all these questions with a number attached to them, and it’s very surprising. You’ll see patients put in a zero for all these numbers and suddenly after three months, those numbers change. And so that really helps to know where the patient lies and so that we can close the gap between what the patient is perceiving about their symptoms versus what their provider is.
Dr. Nicole Rochester:
Ms. Smith, what would you like to add?
Kimberly Smith:
Yeah, I agree with that. I agree with that because using that symptom score, one of the questions is early satiety and losing weight. And that’s a big thing for these patients because they can end up with spleen enlargement. And so one of the main things that I kind of hone in on is, I want you to chart your symptoms. I don’t care what it is, Chart your symptoms. Even if it seems small to you, chart it. Because once you start them on drug, these things can change. And I just speak from one, just remembering one patient that I had who had an enlarged spleen and her main thing was, I want to eat. I just want to eat a burger and a full burger. And I haven’t been able to do that.
And we started her on treatment. And within three months, her main thing was, Kim, I was able to eat a burger and I ate the whole thing. So even though we probably can’t see on scans that it’s smaller, she could tell something was different. And that just made her happy to be able to do that. And so I tell them to chart everything. It doesn’t matter what it is, how mediocre you may think it is or minuscule you may think it is. It’s important because if things change over time, we need to be able to manage it.
Dr. Nicole Rochester:
Absolutely. Thank you. Well, this has been awesome. I have learned a lot as always. It is time to wrap up our roundtable. And I’d like to get closing thoughts from each of you. So, Dr. Jain, what is the most important takeaway message you want to leave with the healthcare professionals who will be listening to this program?
Dr. Akriti Jain:
Yeah, thank you, Dr. Rochester. I thoroughly enjoyed our conversation as well. I think the most important part of all of this is empower your patients. Tell them what they are suffering from. Tell them this is a chronic disease. Tell them you’re there for them. Use the resources we have the MPN symptom score. Use the medications we have if the patients meet those criteria, if they’re having symptoms. Sometimes it’s important to get down to the patient’s level and get to the point where they or get down to the patient’s level and feel what they’re feeling, rate their fatigue, and give them the help they need.
Dr. Nicole Rochester:
Thank you, Dr. Jain. And Ms. Smith, what is the most important takeaway message that you would like to leave with our healthcare professional audience?
Kimberly Smith:
Thank you. I truly appreciated this and I loved it. This was awesome. But I just want to leave that, listen to your patients. They know their bodies. They know themselves. Listen to their family. They’ve dealt with them all their lives. They know when something is different. So just listen to them. Listen to them. Be receptive. And that way we can work as a team to make sure our patients get the best care that they need.
Dr. Nicole Rochester:
Well, thank you both. Just to echo what Dr. Jain and Ms. Smith have said, the most important takeaways are really involving our patients and their families, empowering our patients and families, educating our patients and families, and also valuing this multidisciplinary, interdisciplinary team. So thank you both so much again for being here and being part of this important conversation. And thanks to all of you for tuning in to this Empowering Providers to Empower Patients, Patient Empowerment Network program. Again, I’m Dr. Nicole Rochester. Thank you for watching.
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