title: Quality of life and physicians' perception in myelodysplastic syndromes.
abstract: To detect factors associated with quality of life (QOL) of patients with myelodysplastic syndrome (MDS) and to compare the MDS patients' self-assessed QOL with that perceived by their physicians. In an observational, non-interventional, prospective, multicentre study, QOL was evaluated in 148 patients with newly diagnosed low- and intermediate-risk IPSS MDS. QOL measures (QOL-E v.2, LASA and EQ-5D) and patient-related candidate determinants of QOL were assessed for up to 18 months. Patients' QOL scores were compared with those obtained by appointed hematologists' assessment and with ECOG performance status (PS). Fatigue was not prevalent at diagnosis, though physical QOL and energy levels were low. Transfusion-dependent patients had worse QOL scores. In multivariate analysis, Hb levels and comorbidities were a major determinant of QOL. Physicians' perception of patients' well-being correlated with patients' QOL. Physicians underestimated the impact of disturbances on patients' QOL, mainly in the MDS-specific components. ECOG PS did not discriminate patients according to QOL status. In conclusion, the association of anemia with QOL is confirmed, while co-morbidities emerge as an independent predictor of QOL in MDS. Fatigue is not a major concern. ECOG PS is not a valuable surrogate of patient's QOL, thus highlighting that physician's judgment of patient's well-being must not substitute patient-reported outcomes. Appropriate questionnaires should be used to assess MDS patients' QOL in order to improve communication and therapeutic choice.
authors: Esther Natalie
authors: EN
authors: Oliva
authors: Carlo
authors: C
authors: Finelli
authors: Valeria
authors: V
authors: Santini
authors: Antonella
authors: A
authors: Poloni
authors: Vincenzo
authors: V
authors: Liso
authors: Daniela
authors: D
authors: Cilloni
authors: Stefana
authors: S
authors: Impera
authors: Adelmo
authors: A
authors: Terenzi
authors: Alessandro
authors: A
authors: Levis
authors: Agostino
authors: A
authors: Cortelezzi
authors: Riccardo
authors: R
authors: Ghio
authors: Pellegrino
authors: P
authors: Musto
authors: Gianpietro
authors: G
authors: Semenzato
authors: Cristina
authors: C
authors: Clissa
authors: Teresa
authors: T
authors: Lunghi
authors: Silvia
authors: S
authors: Trappolini
authors: Valentina
authors: V
authors: Gaidano
authors: Flavia
authors: F
authors: Salvi
authors: Gianluigi
authors: G
authors: Reda
authors: Oreste
authors: O
authors: Villani
authors: Gianni
authors: G
authors: Binotto
authors: Patrizia
authors: P
authors: Cufari
authors: Elena
authors: E
authors: Cavalieri
authors: Maria Antonietta Aloe
authors: MA
authors: Spiriti