Quality of life in myelodysplastic syndromes. A special report from the Myelodysplastic Syndromes Foundation, Inc.

Patients diagnosed with myelodysplastic syndromes (MDS) typically report that they have no idea what MDS is. The heavy physical toll of MDS and its management, such as the need for frequent blood work, blood transfusions, red cells or platelets, and physician visits, as well as the debilitating fatigue experienced by some patients, often leads to a diminished quality of life (QoL). The impact of MDS on QoL is much greater than is generally appreciated, and though difficult to quantify, data that document the wide-ranging effects of MDS on patients' lives-both negative and positive--are accumulating. A broadened understanding of QoL aspects of MDS by physicians and nurses--the impact of an MDS diagnosis, of living with MDS every day, and of MDS-specific management approaches and treatments-can only improve clinicians' communication with, and care of, these patients. This special report highlights QoL findings from patient and caregiver forums conducted by The MDS Foundation, Inc. in the United States and in Europe.