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Treating MDS Toolkit

Treating MDS Toolkit

Health professionals are the primary source of information for patients.  AA&MDSIF presents the updated 2014 Treating MDS Toolkit with free 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 needs identified by MDS patients in the survey conducted by the Aplastic Anemia & MDS International Foundation (AA&MDSIF) in 2009 (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.

Another survey of both MDS patients and health care professionals who treat patients with MDS was conducted by AA&MDSIF in 2013 (Disparity in perceptions of disease characteristics, treatment effectiveness, and factors influencing treatment adherence between physicians and patients with myelodysplastic syndromes. Steensma, et al. Cancer 2014, 120: 1670-1676).  This study found that MDS patients and health care providers may have different views of MDS characteristics and the value and limitations of MDS therapies.

Both of these studies showed that improved communications between MDS patients and their health care team may increase understanding of the disease and achieve better treatment outcomes. 

MDS Mobile App

mobile appUse this FREE mobile app to assist with risk stratification and treatment options. It includes medical calculators for these classification/scoring systems:

  • FAB Classification
  • WHO Classification
  • IPSS
  • WPSS


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
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