Resources | Aplastic Anemia and MDS International Foundation

Resources

Health care providers are the primary source of information for their patients, but they too need access to factual and convenient resources to communicate as effectively as possible. Our digital and print educational tools are designed to enhance patients’ understanding of their disease, their prognosis and their treatment goals and options.

To ensure that patients are aware of all the programs and support services that AAMDSIF can provide, we’ve made a downloadable Patient Referral form available below. Health care professionals can complete it on their patients’ behalf, or give it directly to them to submit themselves.  AAMDSIF will connect with these patients to learn about their educational needs and personalize their information and resources. 

Download the AAMDSIF Patient Referral Form »

Resources

Treating MDS Toolkit

This resource provides health professionals with materials to help educate and support MDS patients and their caregivers. Contents include a patient counseling guide, individual patient information sheets and additional resources designed to enhance communication between the health care team and MDS patients.

AAMDSIF presents the Treating MDS Toolkit with free resources for health care providers to communicate with and support patients with MDS. Toolkit contents were developed with study data from two survey research projects conducted by AAMDSIF in recent years. Patients identified educational needs and preferences, which we used to develop this toolkit for use by professionals with their patients. 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.

Citations:

Sekeres, et al. (2009). Perceptions of Disease State, Treatment Outcomes, and Prognosis Among Patients with Myelodysplastic Syndromes: Results from an Internet-Based Survey. The Oncologist 2011; 16:904-911.

Steensma, et al. (2014). Disparity in perceptions of disease characteristics, treatment effectiveness, and factors influencing treatment adherence between physicians and patients with myelodysplastic syndromes. Cancer 2014, 120: 1670-1676.

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 immediately 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 websites.

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
  • Samples of AAMDSIF patient booklets and an order form for additional free booklets

Order form for Treating MDS Toolkit.

What is MDS?

To help health professionals teach patients and their caregivers about MDS, we've created a digital animation explaining the basics, with links to patient educational materials, an FAQ section and more. Clinicians can use the "What is MDS?" video (on our Youtube channel) as an educational tool. Other resources include:

  • Treating MDS Toolkit (includes patient educational materials) 
  • Diagnostic Spectrum of MDS, MDS/MPN, and Myelofibrosis Reference Card 

These materials explain why MDS results in low blood counts, such as anemia neutropenia and thrombocytopenia and the associated symptoms. Information about risk levels, treatments, managing side effects, staying on treatment and preparing for office visits is also provided. Additionally, patients can contact our patient educator for personalized assistance or connect with other patients through the AAMDSIF Support Connection.

The Diagnostic Spectrum of MDS, MDS/MPN, and MF

Updated in 2016, this convenient pocket reference card will help physicians draw a more clear distinction between MDS, MDS/MPN overlap syndromes and MF. The content includes the clinical features, blood and marrow findings, cytogenetic and molecular features for these disorders and the application of these diagnostic variables to the related prognostic scoring systems.

Differentiating between myelodysplastic syndromes, myeloproliferative neoplasms such as primary myelofibrosis, and myelodysplastic syndromes/myeloproliferative neoplasm overlap syndromes can be challenging due to diagnostic similarities among these disorders. While there is some overlap in important risk stratification variables in these chronic myeloid neoplasms, prognostic scoring systems used for individual disorders are distinct. Use this reference card to draw a more clear distinction between the disorders and to help risk-stratify patients.

The card was developed and updated by:

  • Brady L. Stein, MD, MHS, Robert H. Lurie Comprehensive Cancer Center, Northwestern University; Chicago, Illinois
  • David P. Steensma, MD, FACP, Dana-Farber Cancer Institute, Harvard Medical School; Boston, Massachusetts
  • Ruben A. Mesa, MD, FACP, Chair, Division of Hematology & Medical Oncology, Mayo Clinic Arizona; Phoenix and Scottsdale, Arizona

Order form for Reference Card.

PDF version.