The MDS Beacon™

A recent study in the journal Health and Quality of Life Outcomes has shown that myelodysplastic syndromes patients (MDS) in the United States, Germany, France, and the United Kingdom have a strong preference for living without blood transfusions. This is the first evaluation that has assessed the health-related quality of life related to transfusions.

Transfusions are usually used to reduce symptoms of anemia (low red blood cell count), a common characteristic of MDS. Red blood cells are responsible for distributing oxygen throughout the body, and insufficient levels can cause symptoms such as fatigue, infection, shortness of breath, pale skin, and chilled sensations.

During a transfusion, a patient’s blood is replaced with healthy blood from a blood bank. Approximately 80 percent of MDS patients require red blood cell transfusions during their treatment. Reduced dependence on transfusions has been associated with a longer survival time, and some treatments have already been developed to lower the need for transfusions

The study included 47 patients with a median age of 67 years. These patients had been diagnosed with MDS for an average of five years. Eighty-seven percent had previously received a blood transfusion, and 49 percent had received one transfusion within the three months prior to participation in the study.

Patients were asked to give their opinion about specific aspects of transfusions that affected their health-related quality of life. Patients evaluated issues such as

• Reliance on blood transfusions and health care facilities
• Inconvenience of arranging their lives around medical appointments
• Fatigue and tiredness that limited routine physical activities
• Interference of disease with social and family lives
• Worrying about the future
• Discomfort associated with MDS and treatments
• Being at risk of infection
• Relying on others for care
• Feeling burdensome to their families
• Feelings of sadness, hopelessness, and helplessness.

Patients were also asked time trade-off questions that assessed their preference for living with MDS for five years compared to being without disease for a shorter period of time.

Results showed that patients reported some troubles with pain and discomfort (47 percent), moving around (45 percent), routine activities (40 percent), and anxiety or depression (34 percent). The health-quality tests and interviews showed that patients valued transfusion-independence to both reduced transfusions and transfusion-dependence. A few patients even valued transfusion-dependence as worse than being dead (6 percent).

Researchers produced a summary evaluation of patients’ key concerns and the value placed on reduced transfusions or transfusion-independence compared to potentially longer life with transfusions. They concluded that transfusion-independence was associated with a higher quality of life and statistically preferred by patients. This suggests that producing future MDS treatments that aim to reduce transfusion-dependence may become a priority.

For more information, please see the related article in Health and Quality of Life Outcomes (pdf).