OBJECTIVES: To elicit how MDS patients value transfusion independence (TI), reduced transfusions (RT) and transfusion-dependence (TD). METHODS: Forty-seven MDS patients were interviewed, US (n=8), France (n=9), Germany (n=9) and the UK (n=21), to elicit the utility value of TI, RT and TD. Health states (HS), based on literature, focus groups and validated by a haematologist, included the following domains: reliance on transfusions/health care providers; arranging life around medical appointments; fatigue limiting routine physical activities; disease interference with social and family life; worry about the future due to health condition; discomfort; reliance on support for self care and routine activities; feelings of being a burden to family; and feeling sad, hopeless, and helpless. Face-to-face interviews used the Feeling Thermometer VAS and the TTO method to value the HS on a 0 (dead) to 1 (perfect health) scale. Socio-demographic, clinical, and quality-of-life (EQ-5D) characteristics were surveyed. RESULTS: The mean age was 67y (range: 29-83); 45% male, 70% retired; 40% had secondary/high school education, or higher (32%), and 79% lived with family, a partner or spouse, or friends. The mean time from MDS diagnosis was 5 years (range: 1-23). Most patients (87%) received previous transfusions and 49% had received a transfusion in the last 3 months. Mean utility score was 0.78; patients reported at least some problem with mobility (45%), usual activities (40%), pain/discomfort (47%), and anxiety/depression (34%). Few patients had difficulty understanding the VAS (n=3) and TTO (n=4) exercises. Utility scores for TI were higher than for RT (0.84 vs. 0.77; p=0.06) or TD (0.84 vs. 0.60; p<0.001). Three patients rated TD worse than dead. Corresponding VAS scale scores were 78 vs. 56; (p<0.001), and 78 vs. 31 (p<0.001), respectively. CONCLUSION: Patients value TI, suggesting an important role for new treatments aiming to achieve greater TI in MDS.