Quality of Life and Symptoms in Patients With Newly Diagnosed Myelodysplastic Syndromes

This study will ultimately aim at providing the scientific community with additional
patient-reported health status data to support and further facilitate the clinical
decision-making process. This project has thus a number of goals. The main objective of the
protocol is to improve our understanding of the possible added prognostic value of patients'
judgment on their own health status and its potential clinical implications. This would aim
at providing clinicians with an easy and brief to administer patient-reported health status
scale or tool to be used to make more informed treatment decisions. In addition, along with
other recent evidence (also looking at the prognostic value of patients' health status
judgment in MDS patients), the data of this research could possibly serve to devise a
patient-based prognostic index to be used in this higher risk population.

Inclusion criteria

- Patients with newly diagnosed myelodysplastic syndrome (MDS) according to WHO
classification with any known IPSS risk score category. The initial diagnosis of MDS
is acceptable within 6 months before date of registration.

- Having a full baseline QoL Evaluation completed (i.e. EORTC QLQ-C30; EQ5DFACIT-Fatigue
and Control Preference Scale).

- Adult patients (≥ 18 years old).

- Written informed consent provided.

Exclusion criteria

- Patients who have received prior treatment other than platelets or RBC transfusions,
iron chelation, antibiotic/virostatic drugs, vitamins;

- Patients with therapy related MDS.

- Having any kind of psychiatric disorder or major cognitive dysfunction.

- Not able to read and understand local language.