The primary objective is to evaluate whether patient-perceived fatigue can provide prognostic information for survival in patients with recently diagnosed myelodysplastic syndrome. The secondary objectives are:
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To assess changes in various quality of life parameters and symptoms over the course of the disease, to determine whether such changes have prognostic value for the clinical course (i.e., for example, for survival, for toxicity or response to treatment, and for the risk of transformation to acute leukemia)
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Prospectively evaluate the subjective health status (quality of life and symptoms) in the short and long term according to the clinical risk of evolution and according to the type of therapy performed
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To compare the subjective health status (quality of life and symptoms) of patients with stable low-risk myelodysplastic syndrome over time with that of patients with myelodysplastic syndrome evolving to higher risk or to acute leukemia.
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To establish benchmark data for a series of quality of life parameters and symptoms, present at disease onset, to be used in future clinical studies as comparison data
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To evaluate the effect of transfusion dependence at onset or in the subsequent clinical course on different quality of life parameters and symptoms reported by patients
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Evaluate the possibility of developing a prognostic index also based on subjective values of the health status as perceived by the patient
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To evaluate the accuracy of the clinical prediction of the duration of survival (“life expectancy”) made by the attending physician on the basis of his subjective assessments at the time of enrollment
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Evaluate the degree of patients' appreciation for their involvement in treatment decisions based on the clinical risk of the disease, also in relation to the socio-demographic and clinical characteristics of the patients themselves
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Compare the preferences expressed by patients with those expressed by physicians regarding the involvement of patients themselves in the decision-making process for choosing treatment.
