Unraveling Communication Challenges in MDS Treatment


In an interview with Targeted Oncology, Claire Saxton, MBA, and Ashley Moncrief, discussed the importance of education efforts focused on ensuring that patients with MDS understand their diagnosis and options so that they can make informed decisions about their care.

Claire Saxton, MBA

Claire Saxton, MBA

According to early results of the Cancer Experience Registry, it is suggested that significant gaps in communication about myelodysplastic syndromes (MDS) and treatment persist, leaving the need for more patient education efforts and support organizations.

MDS are complex bone marrow diseases impacting treatment decisions. Despite efforts to enhance communication, Claire Saxton, MBA, and Ashley Moncrief explain that patients with MDS do not always understand their disease. Using data from the Cancer Experience Registry, experts studied 140 patients with MDS.

Finding showed that while the group was highly educated, many lacked clarity on key details. Specifically, 33% of patients were unsure of their WHO subtype, with 13% of patients saying that they were never informed and 16% unsure if they were told their subtype. Further, 23% could not recall their IPSS-R score, 21% did not recall discussions about possible transformation to acute lymphoblastic leukemia, and 32% of patients never discussed treatment options.

Overall, this study showed that effective communication about MDS and treatment options is suboptimal as a significant proportion of patients included in this analysis were unable to recall information about their diagnosis critical to informed shared decision-making. As a result, additional efforts to educate patients are necessary.

Ashley Moncrief

Ashley Moncrief

In an interview with Targeted OncologyTM, Saxton, executive vice president of insights and impact at Cancer Support Community, and Moncrief, director of Patient Care for the MDS Foundation, discussed the importance of education efforts focused on ensuring that patients with MDS understand their diagnosis and treatment options so that they can make informed decisions about their care.

Targeted Oncology: Can you discuss the background of your research on communication and shared decision-making in MDS?

Saxton: Cancer Support Community has been partnering with MDS Foundation on our cancer experience registry for [patients with] MDS, looking at what that patient experience is like. One of the things that we did was look specifically at some of the basic information that people living with MDS need to know and understand in order to have good, informed, shared decision-making discussions with their health care providers. We looked at some basic information like what is your subtype of MDS? We asked if they knew what their risk score was, asked if they had been told about what a risk score is, and asked if patients got basic information about the treatments that are available for MDS at diagnosis, or at least at the time they started treatment to get an idea of how much information that they had to help them with shared decision-making.

One of the things that we found is that, in general, only about half of people thought that they got good and understandable information about their subtype, about their risk scores, and about many of the basic treatments available for MDS.

What is the importance of understanding this basic information and shared decision-making in MDS?

Moncrief: What the survey showed is something we all knew but did not have the numbers for, so it is great to see it on paper and I think that kind of hits home a little harder. Basically, it shows in the healthcare and patient advocacy world just how much work we have left to do. One number that really stuck out to me was about 39% [of patients] were not aware of their risk stratification level. Without that awareness, they cannot make an informed decision. We are trying to empower patients to be their own advocate and to make decisions with their physicians rather than just accepting the information that is given. Also, 21% did not realize that they could progress into [acute myeloid leukemia]. Not knowing the trajectory of the disease is kind of scary from a patient perspective, so I think this gave us great data and a really good starting place.

Saxton: There is good information out there. The MDS Foundation and Cancer Support Community has some great patient education, but it needs to get to patients sooner. We need to have consistent messaging across patient advocacy groups, across information they get from their health care providers, and anything that industry is producing to educate patients, because we need to have a consistent and easy to understand message so that patients get what they need to know in order to be an equal part of that shared decision.

Were any of the findings particularly surprising or exciting?

Moncrief: One thing is 29% [of patients] lack information about transfusion support. Most [patients with] MDS have some type of transfusion support, so to see that they lack that understanding, I think that is just basic education that we can do, not even treating the disease per se, but it is part of their journey, so just not to overlook that as well.

Saxton: Another thing that was kind of sad to see is that 15% said that they did not get any information on understanding what MDS is, 2% were not sure if they had gotten that information, and 5% said they did get information on what MDS is, but not until after [they] started treatment. We need to focus on having people understand what MDS is from the point of diagnosis, because those numbers should be higher. People should understand when they get their diagnosis, they should understand what that means.

What should the community oncologist know about this research?

Saxton: The main takeaway that we are trying to focus on is why anemia? Why care about it? Why be serious about it? I think finding that root cause earlier gives patients a little bit more time. Also, I want them to know that for community providers that are small and local, we very much respect them, and it is not that they are not doing a great job, but there needs to be a partnership. I want them to feel comfortable to reach out and get the resources that they need. I am sure we both offer free resources to patients, providers, and we are happy to help.

Moncrief: As an oncologist, if one is telling this important information to patients and their loved ones, it can take several times for patients to hear this to really understand and figure out how that makes a difference. Anything that you and your team can do to help reinforce these messages is important in that education process for patients.

How can we further push forward the communication and awareness for patients with MDS?

Moncrief: I think there is a lot of work left to be done. I would love to see us implement interventions. I know right now we have an initiative to reach those community hospitals as a foundation and then repeat the survey. I want to see what happens when we take this data, when we use this data, and now, we have something to start with. So a lot of work, and I do think 1 thing we found is that patients need a lot less medical jargon. They need to be able to understand this information. Analogies, examples, and stories they can understand would be very helpful.

Saxton: It was interesting to me to see that fewer patients knew what their subtype was then remembered being told about or understanding their risk score. I think some of that is just the risk score makes some sense to patients and why you need to know that whereas subtype does not necessarily make as much sense. Thinking through what is the simplest, easiest way to explain this, and trying to get those plain language messages out to patients and their loved ones so that they can understand it and know what's important for them is


Miller MF, Rogers K, Goldberg SL, et al. Communication that enables shared decision-making in myelodysplastic syndrome is suboptimal: early results from the cancer experience registry. Blood Adv. 2023;142(1):2435. doi:10.1182/bloodadvances.2023011399
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