The burden of fatigue and quality of life in myeloproliferative disorders (MPDs): An international internet-based survey of 1179 MPD patients

BACKGROUND. Few objective data exist on the burden of fatigue and other constitutional symptoms in patients with myeloproliferative disorders (MPD). METHODS. The authors used validated instruments of fatigue and physical activity assessment during an Internet-based symptom survey of 1179 MPD patients (median age, 56 years; 41.4% men). RESULTS. The frequency of self-reporting was 80.7% for fatigue, which was substantially higher than that of pruritus (52.2%), night sweats (49.2%), bone pain (43.9%), fever (13.7%), and weight loss (13.1%). In the majority of patients, these symptoms restricted participation in both social functions and physical activity. In addition, 34.5% of patients needed assistance with activities of daily living, and 11.2% reported MPD-associated medical disability. As expected, the presence of myelofibrosis, anemia, splenomegaly, or other features associated with advanced disease favored a higher degree of fatigue. However, fatigue remained the major complaint also in polycythemia vera (84.9%) and essential thrombocythemia (72.4%); these figures were significantly higher than those of published controls (P < .0001). CONCLUSIONS. The current study identifies fatigue as the major contributor to poor quality of life in MPD, provides baseline information on constitutional symptoms, and underscores the need for the incorporation of quality of life assessment in clinical trials.