QOL-E: A New Tool for the Assessment of Health- Related Quality of Life in Patients with Myelodysplastic Syndromes	PDF File
Esther Natalie Oliva, MD| NFrancesco Nobile, MD  Divisione Ematologia, Azienda Ospedaliera "B-M-M", Reggio Calabria, Italy

Abstract

Myelodysplastic syndromes (MDS) are characterized by abnormal differentiation and maturation of myeloid cells with peripheral cytopenias and an increased risk to transform to leukemia. Patients with MDS must face the reality of a relatively low survival while still mainly depending on supportive and/or experimental therapy. The lack of a specific questionnaire for the evaluation of health-related quality of life in patients with MDS motivated the development and introduction of a new tool, QOL-E, a multi-dimensional, concise, self-administered, reliable, and valid questionnaire.

Myelodysplastic syndromes (MDS) comprise a heterogeneous group of myeloid neoplasms characterized by abnormal differentiation and maturation of myeloid cells, impairment of bone marrow function, and a genetic instability with an increased risk to transform to leukemia. Most patients with MDS present with macrocytic transfusion-dependent anemia with or without leukocytopenia and/or thrombocytopenia during the course of the disease.
At diagnosis, median age is 70 years1. Factors with negative impact on prognosis are increasing age, the number and severity of cytopenias, percentage of bone marrow blasts and bone marrow cytogenetics. According to the IPSS (International Prognostic Scoring System), low and Intermediate-1 risk MDS distinguish patients with a better prognosis with median survival rates over 1 year2. In these patients, however, anemia is the most frequent feature that is associated with symptoms and a deterioration in HRQoL3,4.
Patients with MDS must face the reality of a relatively low survival while still mainly depending on supportive and/or experimental therapy. Novel therapies have been recently introduced (azacytidine, lenalidomide) but are indicated for particular subsets of MDS patients.