Patients with MPNs ‘Don’t Know What They Don’t Know'

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Nurse practitioner Charina Toste explains why it is important for patients to be empowered to have educated conversation with their care teams.

For patients with myeloproliferative neoplasms (MPNs) — blood cancers that cause the bone marrow to overproduce red or white blood cells or platelets — being able to engage in educated and productive conversations with their care team can be crucial.

“There are so many variables in cancer from not only the diagnoses, but ‘how do we treat it?’ to what the prognosis is, and that's always evolving (so) that it's hard for providers to keep up with that, let alone patients,” said Charina Toste, a nurse practitioner specializing in oncology and hematology at OptumCare Cancer Care and a professor at Chamberlain College of Nursing, both located in Las Vegas, Nevada.

When it comes to the vast category of MPNS (which includes a range of diseases such as myelofibrosis, essential thrombocythemia, and polycythemia vera) patients don’t know what they don’t know.

“(Patients) don't always know, what is the treatment that's out there? What are the clinical trials that are out there? Oh, and then let's talk about symptom management, how is my life going to change? How is this going to affect me? How is this going to affect my family? These are questions patients don't even know to ask. And they trust their health care provider to have the three or four hours it takes to educate them at an appointment that usually is only 15 to 30 minutes.”

Toste spoke with CUREⓇ about the importance of education for patients with MPNs in order to empower themselves to have informed conversations with their care team.

CUREⓇ: In general, why is it so important for patients to educate themselves, and be prepared to have informed conversations with their care team as they're going through their cancer journey?

pull quote: "I think it's important to at least have a solid basis of information about your disease, your cancer diagnosis, so you know what to ask."

Patients with myeloproliferative neoplams should learn about their disease to ensure that they know what questions to ask, a nurse practitioner said.

Toste: I think because with any type of diagnosis, there's kind of the shock factor. And once you get over the shock factor, it's a different language that patients are learning, it's a different lifestyle that they're learning, they have to learn to adjust their entire life for it. And many patients don't know what to ask because they don't know what they don't know.

So, I think it's important to at least have a solid basis of information about your disease, your cancer diagnosis, so you know what to ask. There are so many variables in cancer, from not only the diagnoses, but how we treat it to what the prognosis is, and that's always evolving (so) that it's hard for providers to keep up with that, let alone patients.

What sorts of questions should patients be prioritizing, especially if they are early on in the experience?

‘What is their current diagnoses?’ specifically, so that they understand their diagnoses. Quite honestly, they hear the words and they don't understand what those words mean; if they see myeloproliferative neoplasms, that's all they might look up and not know their specific diagnoses (or) that there are different types underneath there.

As we well know, there are so many different hematological malignancies. And when you say the word leukemia, there are 200 different types of leukemia. So, you have to know exactly what you have. And what does that mean to you? What does that mean, as far as prognosis? What can I expect now? And what can I expect in the future? So they can adjust their life.

Because if anything, after a world pandemic has happened, we realize we can't always predict the future and we have to enjoy what we have to the best (of our) abilities. So, does this mean I have to quit my job? Does this mean I need to adjust my family lifestyle? Should I move to where I have family and support? Will I be OK here on my own? I think those are the questions that they need to ask: how is it going to impact them personally now and in the future so they can prepare?

What are some specific challenges or roadblocks related to MPNs that make it a particularly disease type for patients to inform themselves on?

Not always but usually, most of these diagnoses are based in an elderly population. So, with the myelofibrosis and the polycythemia vera, you're usually looking around the 60s or 70s age group. And for a lot of these patients, they don't always have the best support, so they don't always know how to go to Dr. Google and look everything up. They don't always know what the latest clinical trials are, they don't always know how to ask those questions. And they aren't always surrounded by family members, their children are grown, they have their own lives. So, they don't always have that support that others would have. Sometimes they're on their own, and they don't have transportation. They're wondering about the basics: economics, transportation, those kinds of things. So that's how it affects them. And those can be some of the obstacles going forward for these patients in obtaining information. And then (for) some of these patients, some are working, some aren't some are active and family, some aren't. Some are socially active.

And I also think in an elderly population, what are some of the symptoms, when you look at a patient and they go, ‘Well, yes, I'm tired. Yes, I have bone pain, but I'm 80. How do I know that this is disease related?’ So, I think those are also some of the obstacles. Whereas if you’re 20 or 30 years old, and you're saying, ‘Wow, I have a lot of bone pain, I have a lot of fatigue, I have memory loss,’ that's going to seem unusual at that age versus if you’re older, a lot of times you just take it as the age and the sands of time moving forward. First, is this actual disease might be progressing.

Say there is a patient who is kind of between doctor visits and is looking to inform themselves further, what are some resources that are out there for patients to turn to if they’ve got weeks or months to go before they see their provider for the next time?

Sometimes I always feel there’s not enough. I know there are associations that they can look up and reach out to. I know there are support groups, there are Facebook support group pages. Sometimes, though, you have to worry about the accuracy of information. I know there are pharmaceutical companies out there that also provide information about their medications, or sometimes just disease-related treatments and information. So, that’s out there.

But honestly, it’s (about) going to the journals of medicine or magazines or things like that to get more neutral, objective information, honestly, because you don't know and I hear so many times as provider, 'Well, I read this on the Internet,' and I thought, 'Oh, wow, that was a big waste of time.' And it really skews what (information) they have. Or they get information from (people who) say, 'Oh, well, in healthcare, I know this.' Well, it's not our healthcare system. They might have followed health care systems overseas. So different societies and different cultures have different decisions when it comes to treatment plans and pathways. So sometimes, I think it's very challenging for them to find accurate information, even in today's society.

This transcription has been edited for length and clarity.

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