Quality of life and physicians' perception in myelodysplastic syndromes

American Journal of Blood Research

Valeria Santini¹  Teresa Lunghi¹  Stefana Impera¹  Gianpietro Semenzato¹  Maria Antonietta Aloe Spiriti¹  Vincenzo Liso¹  Valentina Gaidano¹  Adelmo Terenzi¹  Alessandro Levis¹  Esther Natalie Oliva¹  Riccardo Ghio¹  Antonella Poloni¹  Silvia Trappolini¹  Patrizia Cufari¹  Agostino Cortelezzi¹  Elena Cavalieri¹  Gianni Binotto¹  Cristina Clissa¹  Gianluigi Reda¹  Pellegrino Musto¹  Carlo Finelli¹  Oreste Villani¹  Flavia Salvi¹  Daniela Cilloni¹ 

关键词: Myelodysplastic syndromes;    quality of life;    comorbidities;    anemia;    transfusion-dependence;    patient-reported outcomes;   

DOI  :  

学科分类：血液学

来源: e-Century Publishing Corporation

【 摘 要 】

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.

【 授权许可】

Unknown