Treating MDS Toolkit

Health professionals are the primary source of information for patients.  The purpose of this toolkit is to provide resources for healthcare providers to communicate with and support patients with MDS.  These materials will help you share the necessary information efficiently and effectively. 

The toolkit contents are based on the needs identified by MDS patients in the survey conducted by AA&MDSIF and summarized in The Oncologist in 2011 (Perceptions of Disease State, Treatment Outcomes, and Prognosis Among Patients with Myelodysplastic Syndromes: Results from an Internet-Based Survey. Sekeres, et al. The Oncologist 2011; 16:904-911).  This survey showed that patients with MDS have a limited understanding of their disease characteristics, prognosis, and treatment goals. Many MDS patients were unaware of their disease severity, having been told they had a “blood disorder,” and thus may not be prepared to discuss disease-modifying therapies. 

What the patient may be understanding vs. What you may be telling them

Upon hearing a diagnosis of MDS for the first time, patients may not be able to comprehend what the disease is, their prognosis, or their treatment options.  They likely have never heard of the disease prior to their diagnosis and do not know anyone who has had MDS.  This can be an overwhelming and confusing time for patients and families. 

With each visit, information will need to be repeated and reinforced to the patient and/or a caregiver who is accompanying them.  It is often helpful to offer information in a variety of ways – one-on-one discussion, print materials, visuals, video presentations, and recommendations for reliable Web sites. 

Clear presentation of information and active engagement of patients in the management of their disease can help clarify misperceptions and improve patient understanding of MDS.

The toolkit includes the following resources:

• Summary of the patient survey
• Counseling guide
• Diagnostic Spectrum of MDS, MDS/MPN, and MF Reference Card
• Patient information sheets
• AA&MDSIF free patient booklet order form