Empowering Patients Through Shared Decision Making in Myelodysplastic Syndromes With Claire Saxton, MBA
At the 2023 American Society of Hematology (ASH) Annual Meeting, Claire Saxton, Executive Vice President of Insights and Impact at Cancer Support Community, presented her team's study on communication that enables shared decision making in myelodysplastic syndromes (MDS). While there, she sat down with Oncology Data Advisor to discuss more about the results of the study and ways that health care professionals and patient advocacy groups can partner to ensure that clear and consistent messages are being delivered to patients with MDS so that they can be more informed and involved in their care.
Oncology Data Advisor: Welcome to Oncology Data Advisor. Today, we're here at the ASH Annual Meeting, and I'm joined by Claire Saxton. Thanks so much for coming on the show today.
Claire Saxton, MBA: Thanks for having me.
Oncology Data Advisor: To start off, would you like to introduce yourself and tell us a little bit about what you do, as well as what Cancer Support Community does?
Ms. Saxton: Sure, I'm Claire Saxton. I'm the Executive Vice President of Insights and Impact for Cancer Support Community. We are an organization that provides wellness services, support, and education to cancer patients, including MDS patients.
Oncology Data Advisor: Awesome. Today, we're talking about your upcoming presentation on communication that enables shared decision making in myelodysplastic syndromes. To start off, would you like to give us a little bit of background about shared decision making and its importance in MDS?
Ms. Saxton: Shared decision making can be anxiety-producing for cancer patients, including MDS patients. A lot of the time, patients don't feel like they have enough information to really be able to be an equal partner in that decision making with their health care team. One of the things that we did at Cancer Support Community was to look and see what patients told us they knew about the disease, what information they had been offered about the disease, and what treatments they had been told about. We wanted to see if they even had the basic information that one might need to be able to talk with their health care team about why a treatment might be preferred for them.
Oncology Data Advisor: Thank you for the overview. What was your goal for this study, and how did you and your team go about designing and implementing it?
Ms. Saxton: We used our Cancer Experience Registry that already collects data from both MDS patients as well as other cancer patients and caregivers. We looked at some of the questions that we asked of 140 participants who have MDS. We really wanted to see how well MDS patients know the basic information that they might need in order to be part of that shared decision making with their health care team.
Oncology Data Advisor: What results did the study reveal?
Ms. Saxton: Sadly, a large number of MDS patients didn't feel like they had the information that they needed to be part of that shared decision making. A lot of them didn't have basic MDS information like, what is your risk score? What specific type of MDS do you have? That knowledge is really crucial for making treatment recommendations, and these are things that patients didn't have or didn't understand. Out of the 140 participants, we heard that only 52 of them had received information around the time of their diagnosis about risk score, and only 41% had heard information about MDS subtypes at time of diagnosis.
Then in terms of information that they currently knew, 24% did not know their risk score. Of those 24%, 48% said that they weren't told, and 52% just weren't sure or didn't recall. Among the 33% who didn't know their subtype, 39% said that they weren't told, and 61% weren't sure. If you look across the vast majority of MDS patients with this representative sample, the fact that so many didn't know or at least didn't remember being told shows that there are huge communication gaps, and it's a challenge to even begin the conversation about what treatment might be best for you. It's really hard to have those conversations without that basic information.
Oncology Data Advisor: That's so surprising to hear the numbers were so low. It definitely reveals a need for further communication and education in this area. In light of these results, what changes do you think could be implemented to prioritize education, communication, and shared decision making in MDS?
Ms. Saxton: Right, and remember that this was a cohort of participants who are highly educated and highly motivated to participate in our registry questions. Even among them, clearly, there has to be a lot more communication about MDS as a disease, about risk classification, and about treatment options.
Oncology Data Advisor: Definitely. How can organizations like Cancer Support Community and other similar groups help to achieve this goal?
Ms. Saxton: We know that information like this is hard to grasp in one sitting, so maybe the patients did hear it from their health care provider, but it went in one ear and out the other. Patient advocacy groups and the health care team that they're seeing over time can help by reinforcing these messages over and over. There needs to be a consistent message about what's important in MDS and what you should know so that you can help make treatment decisions. Patient advocacy groups need to come together, industry needs to come together, and professional associations of health care professionals need to come together to make sure that we're having a consistent, yet easy-to-understand message about what MDS is and what treatments are available depending on your risk scores and your subtype of MDS.
Oncology Data Advisor: Absolutely. It's definitely challenging to remember everything that happens during a doctor's appointment, especially for a disease as complex as MDS, so it definitely speaks to the importance of having these messages. Is there anything else you'd like to mention about either your presentation or your other work in this area?
Ms. Saxton: I do want to mention that the MDS Foundation was a partner on this research with us, and that given the complexities of an MDS diagnosis, more education for patients is necessary. Patient support organizations such as the Cancer Support Community and MDS Foundation can serve as valuable educational resources, but we also have to make sure that clear and easy-to-understand messages are being consistently deployed across patient advocacy groups, industry, and by health care professionals.
Oncology Data Advisor: Definitely. It's wonderful to hear these messages. Thank you so much for coming by today to tell us all about this, and we look forward to hearing about more initiatives in the future.
Ms. Saxton: Thank you so much.
About Ms. Saxton
Claire Saxton, MBA is the Executive Vice President of Insights and Impact at Cancer Support Community. In this role, she focuses on sharing Cancer Support Community's insights outside of the organization and ensuring that the patient experience remains at their core. Ms. Saxton has been in the field of health care advocacy since 1996 and has worked for organizations such as the Urology Care Foundation, the Bladder Cancer Advocacy Network, and the Breast Cancer Resource Center. She has extensive experience in leading national patient education and outreach efforts and awareness campaigns.
For More Information
Miller MF, Rogers K, Goldberg SL, et al (2023). Communication that enables shared decision-making in myelodysplastic syndrome in suboptimal: early results from the Cancer Experience Registry. Presented at: 2023 American Society of Hematology Annual Meeting. Abstract 2435. Available at: https://ash.confex.com/ash/2023/webprogram/Paper189592.html
Cancer Support Community (2023). Available at: https://www.cancersupportcommunity.org/
MDS Foundation (2023). Available at: https://www.mds-foundation.org/
Transcript edited for clarity. Any views expressed above are the speaker's own and do not necessarily reflect those of Oncology Data Advisor.