The myelodysplastic syndromes (MDSs) are heterogeneous hematopoietic diseases associated with bone marrow failure, peripheral cytopenias, and a propensity for progression to acute myeloid leukemia (AML). In 2000, an International Working Group (IWG) of investigators proposed standardized response criteria which included quality of life as an important treatment goal. Quality of life becomes important when we are presented with a patient who is not a candidate for intensive curative therapy for myelodysplasia. The purpose of this literature review is to determine what quality of life instruments are optimal for this disease process and review is to examine the types of quality of life tools that have been used in published phase II and III studies of myelodysplasia. The focus is on adult hematology, and excludes studies with curative intent such as bone marrow transplantation, as well as phase I studies. Clinical trials from 1996—2006 were reviewed. 80 clinical trials were analyzed for the presence of attention to quality of life data. 7 trials used a quality of life instrument. All of the studies which used a quality of life instrument were published after 2003. Types of quality of life instruments used were the
(EORTC) QLQ-C30
FACT-An along with the Geriatric Depression Scale (GDS)
Short Form-12 (SF-12).
The most common tool was the FACT-An. This was used in 5/7 studies that had quality of life tools. Of the 7 studies, 4 included the effect of therapy in all domains. The remainder focused on fatigue and/or anemia symptoms and their relation to quality of life.
Conclusion: While the IWG response criteria have prompted consideration of quality of life as response criteria, there must be better uniformity in quality of life assessment, as well as determination of the optimal tool to use. A disease specific quality of life instrument should be considered one solution to this problem.
Disclosure: No relevant conflicts of interest to declare.
