Gaps in MDS Patient Knowledge Revealed by Cancer Experience Registry® Study

MDS is a type of cancer that affects the bone marrow’s ability to produce healthy blood cells. Many patients don't fully understand their condition, so professionals are making more efforts toward their patients' comprehensive understanding and awareness of MDS. That way, patients can make informed decisions, consider second opinions, and advocate for themselves.

The Cancer Experience Registry® is an ongoing online research study conducted by the Cancer Support Community that seeks to uncover cancer's emotional, physical, practical, and financial impact from the patient's perspective.

Their study of 140 MDS patients, based on self-reported outcomes, revealed the following results:

• 33% weren't sure about their specific MDS subtype. 
• 23% couldn't remember their risk status, of which half of the patients stated that their risk score was never shared with them.
• 21% didn't recall discussions about the risk of MDS transforming into leukemia. 
• 32% of patients who have not required treatment so far stated that they have never discussed treatment options, and an additional 6% couldn’t remember if they had.

These numbers shed light on the significant gaps in understanding and communication that exist among MDS patients and their medical team. With a considerable percentage unsure about their specific subtype of MDS and unable to recall essential details that are key for treatment decisions. The lack of discussions on potential complications and treatment options shows an imperative need for clearer explanations and improved education efforts. By addressing these issues, healthcare providers can empower patients to make informed decisions about their care, ultimately improving outcomes and quality of life for those affected by this challenging disease.

If you want to participate in studies like this, you can create an account and answer the HealthTree surveys. You can help other patients and doctors identify research necessities and education gaps and work toward finding a cure! 

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At HealthTree Foundation, We Want You To Have All the Information You Need Throughout Your Journey With MDS

At HealthTree Foundation for MDS, we constantly develop free, on-demand resources to help you understand your MDS. 

• Learn all you need to know about your MDS through our educational programs and resources, such as, such as HealthTree University and MDS 101 articles
• Meet other MDS patients and talk to MDS experts by joining our MDS webinars
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