MPN Care Barriers | Gaps in Patient-Centered Care
What are MPN care barriers and solutions? Experts Dr. Akriti Jain from Cleveland Clinic and Kimberly Smith from Duke Health discuss common obstacles MPN patients encounter in patient-centered care, how varied factors play a role in care, and methods and approaches to support patients in empowered care.
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Transcript:
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.
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?
Kim 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 core 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?
Kim 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.
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