Tag Archive for: MPN treatment options

Understanding MPN Treatment Goals and Shared Decision-Making

Understanding MPN Treatment Goals and Shared Decision-Making from Patient Empowerment Network on Vimeo.

Myeloproliferative neoplasm (MPN) treatment goals can vary widely among patients, so how do care providers work with different goal types? Expert Dr. Idoroenyi Amanam from City of Hope explains how treatment approaches can vary, his perspective in shared decision-making, and advice for patients to receive optimal care.

[ACT]IVATION TIP:

“I would recommend that you get a clear expectation, with your diagnosis as to what that means for you specifically and what the treatments will do for you short-term and long-term.”

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Transcript:

Lisa Hatfield:

 So, Dr. Amanam, you probably have patients coming in with a wide spectrum of knowledge from patients who want to be told what to do for treatment to patients who might even bring in abstracts from ASCO and ASH. So how do you work with your patients to make those treatment decisions? And a second part to that question is, with increasing treatment options, what should your MPN patients consider when deciding on treatments?

Dr. Indoroenyi Amanam:

So I believe that it’s very important to understand contextually where the patient’s coming from. And you’re right, I think some patients actually want to receive a presentation on the data. From a randomized Phase III clinical trial, there are some patients who are not interested in hearing about the data. They just want you to tell them what you think. And I think understanding where a patient’s coming from is very important. And so I believe, at least from my experience with the diversity of experiences in my own life, that I have the capacity to really gauge what patients need in order to proceed forward with the treatment that they’re most comfortable with. I think that’s the answer to that question. For with…in regards to increasing treatment options, it’s difficult because I think we’re in a very exciting time for MPN patients, we have a lot of treatment options.

We have a lot of clinical trials, we have a lot of…we have more FDA-approved therapies than we did 10 years ago. And I think it’s important to set the expectations as to what a therapy does. So some therapies will potentially decrease the risk of the disease progressing. There are some therapies that really help improve symptoms. There are some therapies that do both, and I think it’s very important to be very clear as to what each individual therapy does and the side effects associated with those therapies. And it usually, for the most part, patients are pretty…they declare themselves as to what they’re looking for. I think everyone walking into a room who’ve been told that they have cancer, they want to cure, but once you set the expectations that for MPNs this is possibly a chronic disease, and there are some issues associated with the chronic disease that we have to manage. And I think once it’s clear as to what MPN means for the patients, it changes the understanding of wanting a cure.

And I think, I will say I want for us to get to a point where we can cure all patients, but we don’t, we aren’t not there yet. And so ensuring that patients have a good quality of life is the most important thing for me and really being happy with what we’re doing in terms of treatment.

So my activation tip for this question is, I would recommend that you get a clear expectation, with your diagnosis as to what that means for you specifically and what the treatments will do for you short-term and long-term.


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What Impact Does Telemedicine Have on Clinical Trials for MPN Patients?

What Impact Does Telemedicine Have on Clinical Trials for MPN Patients? from Patient Empowerment Network on Vimeo.

For myeloproliferative neoplasm (MPN) patients, what impact does telemedicine have on clinical trial access? ExpertDr. Jamile Shammofrom Rush University Medical Center explains the current environment for clinical trial access and her perspective on how trial access should be approached in the future for improved MPN care. 

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Transcript:

Dr. Jamile Shammo: 

So, there’s no doubt that COVID has certainly impacted our ability to enroll patients on clinical trials. There have been a lot of governing bodies that have created various rules and regulations around that to facilitate enrolling patients on clinical trials, and I think right now we are seeing that this has become feasible, such that we are able to enroll patients yet again on the clinical trial. So, now I think that we have the vaccine that is available, it has become a little bit more feasible and possible to do so. So, this should not stop us. I think we should continue to seek better treatments for MPN patients actually the only way to do so is by you know, only patients on trials, because we certainly don’t have a perfect way to provide care at the moment, we always need to come up with better ways and that would be one way to do so. 

The MPN community truly should partner with their physician and learn as much as possible about their disease and about available treatment options, and perhaps show some support for available clinical trials because this is the only way that we can perhaps understand how we can do a better job in treating patients who have MPNs.