Aplastic Anemia & MDS International Foundation Announces Treating MDS Toolkit, a New Resource for Health Care Providers
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<font size=”2″ face=”Arial”>ROCKVILLE, Md.</font>, Dec. 6, 2011 /PRNewswire/ — The Aplastic Anemia & MDS International Foundation (AA&MDSIF) is pleased to announce the launch of the Treating MDS Toolkit, a new, free resource developed for health care providers to communicate with and support their patients with myelodysplastic syndromes (MDS).
The toolkit was developed in response to the results of an MDS patient survey conducted in 2009 by AAA&MDSIF and led by Mikkael A. Sekeres, MD, MS of Cleveland Clinic. The findings were summarized in the journal 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 found that many MDS patients lack knowledge of MDS disease basics and are unaware of the severity of the disease. As a partner in patient care, AA&MDSIF designed these toolkits to help clinicians share necessary information with their patients efficiently and effectively.
The toolkit contains an array of patient information sheets that can be distributed to patients at the health care provider’s discretion based on their level of knowledge of the disease, the frequency of their office visits and their individual diagnosis. Patient information sheet topics include: What is MDS, Knowing your MDS Risk Level, Understanding the Symptoms of MDS, Treatment for Lower-Risk MDS, Treatment for Higher-Risk MDS, Managing the Side Effects of MDS Therapy, Staying on Therapy and Preparing for Office Visits.
The toolkit also includes a counseling guide which explains how to use it as well as information about the MDS Patient Survey and a reprint of the article published in The Oncologist. In addition, sample AA&MDSIF patient education booklets are provided along with an order form so health care providers can order more free materials for their office as necessary.
“As health care practitioners, it’s our responsibility to educate our patients and their caregivers about this serious disease,” said Dr. Sekeres. “We play a critical role in their disease management and by offering the Treating MDS Toolkit as a resource, AA&MDSIF is really showing their commitment to their partnership in patient care.”
According to John Huber, AA&MDSIF Executive Director, “This toolkit is a direct result of listening to our patients and responding to their needs. A diagnosis of MDS is life-changing and difficult to comprehend. This new resource will facilitate communication between health care clinicians and MDS patients and their caregivers.”
To order a toolkit, please visit http://www.AAMDS.org/treating-mds-toolkit. Materials can also be downloaded online.
In addition to the Treating MDS Toolkit, AA&MDSIF developed a new mobile app for MDS Risk Classification and Stratification, now available for Android, BlackBerry and iPhone platforms.
- Medical calculators for IPSS, WPSS, FAB and WHO
- Resource section including links to NCCN Guidelines, AA&MDSIF web site, journal articles and CME programs
- Extensive FAQ section with answers by MDS experts
Visit www.AAMDS.org/mobileapp for more information.
About the Aplastic Anemia & MDS International Foundation
The Aplastic Anemia & MDS International Foundation is the world’s leading non-profit health organization dedicated to supporting patients and their families living with aplastic anemia, myelodysplastic syndromes (MDS), paroxysmal nocturnal hemoglobinuria (PNH) and related bone marrow failure diseases. AA&MDSIF provides answers, support and hope to thousands of patients and their families around the world. Founded in 1983, the Aplastic Anemia & MDS International Foundation is celebrating nearly 30 years of service as a recognized and respected leader in patient education, advocacy and research.
<font size=”2″ face=”Arial”>CONTACT: Allison Klein, +1-917-514-5836, email@example.com</font>
SOURCE Aplastic Anemia & MDS International Foundation