Survey Highlights the Unique Challenges Faced by Patients with MPNs

Individuals living with myeloproliferative neoplasm (MPN) often face a markedly different experience compared to those patients with other types of blood cancer. Unfortunately, there tends to be less known about this population due to its smaller size. But tools like the recently published “Blood Cancer in America” 2020 survey aim to help highlight the disparities faced by the MPN community and give a voice to those who may feel unheard.
BY Jessica Skarzynski
PUBLISHED June 12, 2020
Individuals living with myeloproliferative neoplasm (MPN) often face a markedly different experience compared to those patients with other types of blood cancer. Unfortunately, there tends to be less known about this population due to its smaller size. But tools like the recently published “Blood Cancer in America” 2020 survey aim to help highlight the disparities faced by the MPN community and give a voice to those who may feel unheard.

Released by Health Union, an organization dedicated to creating patient-based communities, the survey included 85 questions that addressed a range of concerns that patients with blood cancers face, including diagnosis, quality of life, relationships, symptom management, and treatment.

Of the 1,919 survey respondents, 196 (10%) were patients with a type of MPN. Of the remaining total, 30% of patients (571) had multiple myeloma, 28% (528) had a form of leukemia, 27% (509) had a form of lymphoma, and 6% (115) had other various types of blood cancer.

In an interview with CURE®, Pam Kline Munnelly, director of community development at Health Union, went into detail about why such disparities exist between patients with MPN and other blood cancers, and how patients can better address their emotional needs by working with their caregivers and health care teams.

CURE®: Can you go into a detail about how the journey for patients with MPN differs from that of patients with other types of blood cancer like leukemia or lymphoma?
Kline: We found that the experience for people with MPN can be really different in the physical sense, for instance in treatment choices or the treatment experience, and also in that emotional and mental health sense as well.

From a treatment perspective, we found that people with MPN may not undergo some of the common types of treatment that we see for blood cancer patients or cancer patients in general, like chemotherapy, or perhaps watchful waiting, where they're just being surveilled. They're not actually undergoing active treatment.

Also, we hear people talking a lot about other, less common types of cancer treatment, like aspirin therapy, or phlebotomy, they receive. Our survey showed that people with MPN were less likely to receive some of those other more common types of treatment for blood cancer or cancer in general, such as radiation or steroid therapy, or surgery, so they may be having a different treatment experience and treatment journey than a lot of those other blood cancer patients who have more common subtypes like leukemia, lymphoma, or myeloma.

Additionally, we found that they tend to have some complicated relationships with their physicians and tend to have less favorable views of their relationship with their health care provider. We also found that they were more likely to feel like their emotional needs were not being met, which was a really enlightening part of this survey for us as well.

Why do you think disparities in emotional care exist?
Something we hear in the blood cancer community overall is that people often are told when they have blood cancer, that blood cancer is a good cancer, or that they should be grateful that they have blood cancer because the outcomes are often more positive than other types of cancer. And not surprisingly, we hear how frustrating diminishing and upsetting that type of commentary can be. And I think that rings especially true for the MPN community.

So, while people with MPN may be able to live many years with their cancer, many undergo rigorous treatments, they may experience side effects and symptoms that are very frequent and very debilitating. And that experience is really impactful for them and really, really impacts their day to day life.

There's also a lot of fear and worry in this community. So anecdotally, something that we see a lot of conversation around is fear that their MPN will progress to a more aggressive type of blood cancer like an acute leukemia. We also see worry that if their MPN is not under control, they might have a traumatic event like a heart attack or a stroke. And these are emotions that really weigh on people.

And what we found in our survey was that a lot of times, the MPN community was actually more likely to say they turn to online resources for support, like online patient communities, Facebook, or mobile apps where they can learn about their condition and really connect with other people who are going through similar experiences that truly understand what they're going through.

Why do you think patients with MPN are less comfortable discussing their condition with their health care providers?
We saw that people with MPN were less likely to feel satisfied with their overall care. They're also less likely to feel that they received a clear explanation of their treatment options. And when we couple that data with what we see in our community, we hear a lot of talk from people with MPN really encouraging the newly diagnosed, or people who are changing treatments, to try to find a physician who has specific experience treating MPN.

We actually saw that more than half of the respondents with MPN were more likely to get a second opinion at their time of diagnosis. So, they seem to be heeding that advice from their fellow MPN patients.

But on the flip side, we frequently see people commenting that they just can't find someone in their area who has that specific experience. And that certainly impacts that relationship with your provider, if you don't feel like they have that type of in-depth experience treating your condition from both the treatment perspective, and that more human perspective of just understanding what you're going through.

So how can patients work with their caregivers to better address their emotional needs?
I think since we see MPN patients turn to online sources of support, that caregivers can really turn to those sources as well, to better understand what their loved ones are going through.

We actually see people tagging their loved ones a lot and saying this is exactly what I'm going through, or commenting that they're going to share this with a spouse or a loved one, because it so perfectly sums up maybe something that they haven't been able to express themselves.

And on the flip side, they can also get a lot of support themselves as caregivers, we know caregiving is an incredibly challenging, challenging role, and often comes with many questions, concerns, fears and worries, and they can gain a lot of support from connecting with other caregivers. So, I think working together to really understand what the person is going through is very important.​​​
Be the first to discuss this article on CURE's forum. >>
Talk about this article with other patients, caregivers, and advocates in the MPN CURE discussion group.

Related Articles

1
×

Sign In

Not a member? Sign up now!
×

Sign Up

Are you a member? Please Log In