Quality of life in patients with myelodysplastic syndromes

Myelodysplastic syndromes severely affect the quality of life (QOL). Until recently, available treatments, at least for the older patients, have been unsatisfactory and largely symptomatic. Having little impact on prognosis, the benefit of therapy on symptomatic aspects and QOL had to be ascertained. Erythropoesis stimulating factors like erythropoietin and darbepeotin have been shown to improve QOL in subgroups of MDS patients temporarily. QOL is now discussed in the context of the new hypomethylating agents and lenalidomide. Improvements in haemoglobin levels are associated with gains in QOL, which are not offset by the manageable side effects of these therapies. However, dealing with the emotional burden of a life threatening disease and the related uncertainty about the future remain a challenge in the interaction with these patients.