Am J Blood Res 2012;2(2):136-147
Original Article
Quality of life and physicians' perception in myelodysplastic syndromes
Esther Natalie Oliva, Carlo Finelli, Valeria Santini, Antonella Poloni, Vincenzo Liso, Daniela Cilloni, Patrizia Guglielmo, Adelmo
Terenzi, Alessandro Levis, Agostino Cortelezzi, Riccardo Ghio, Pellegrino Musto, Gianpietro Semenzato, Cristina Clissa,
Teresa Lunghi, Silvia Trappolini, Valentina Gaidano, Flavia Salvi, Gianluigi Reda, Oreste Villani, Gianni Binotto, Elena
Cavalieri, Maria Antonietta Aloe Spiriti
Hematology, A.O. Bianchi-Melacrino-Morelli, Reggio Calabria, Italy; Institute of Hematology "Seràgnoli", S.Orsola-Malpighi
University Hospital, Bologna, Italy; Hematology, AOU Careggi, University of Florence, Florence, Italy; Hematology, Università
Politecnica delle Marche, Ancona, Italy; Hematology, Università degli Studi di Bari, Bari, Italy; Department of Clinical and
Biological Sciences, University of Turin, Orbassano, Italy; Hematology, Presidio Ospedaliero Garibaldi-Nesima, Catania, Italy;
Oncology and Hematology Department, A.O. Silvestrini, Perugia, Italy; Hematology, A.O. SS Antonio e Biagio, Alessandria, Italy;
Hematology, IRCCS Fondazione Ca’ Granda and University, Milan, Italy; Department of Hematology/Oncology, Azienda
Ospedaliero Universitaria “San Martino”, Genova, Italy; IRCCS, Department of Onco-Hematology, Centro di Riferimento
Oncologico della Basilicata, Rionero in Vulture (Pz), Italy; Dep. Of Clinical and Experimental Medicine, Hematology Section,
Padua University School of Medicine, Padua, Italy; Hematology, A.O. Sant’Andrea, Roma, Italy; Department of Clinical and
Molecular Medicine, Università Sapienza medicina e psicologia, Roma, Italy
Received April 24, 2012; accepted May 21, 2012; Epub May 25, 2012; Published June 15, 2012
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 patient 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.
Keywords: Myelodysplastic syndromes, quality of life, comorbidities, anemia, transfusion-dependence, patient-reported
outcomes
Address all correspondence to:
Dr. Esther Oliva
Azienda Ospedaliera "Bianchi-Melacrino-Morelli"
Divisione Ematologia
Reggio Calabria, Italy.
Tel: +39 329-7978204
E-mail: estheroliva@hotmail.com
Original Article
Quality of life and physicians' perception in myelodysplastic syndromes
Esther Natalie Oliva, Carlo Finelli, Valeria Santini, Antonella Poloni, Vincenzo Liso, Daniela Cilloni, Patrizia Guglielmo, Adelmo
Terenzi, Alessandro Levis, Agostino Cortelezzi, Riccardo Ghio, Pellegrino Musto, Gianpietro Semenzato, Cristina Clissa,
Teresa Lunghi, Silvia Trappolini, Valentina Gaidano, Flavia Salvi, Gianluigi Reda, Oreste Villani, Gianni Binotto, Elena
Cavalieri, Maria Antonietta Aloe Spiriti
Hematology, A.O. Bianchi-Melacrino-Morelli, Reggio Calabria, Italy; Institute of Hematology "Seràgnoli", S.Orsola-Malpighi
University Hospital, Bologna, Italy; Hematology, AOU Careggi, University of Florence, Florence, Italy; Hematology, Università
Politecnica delle Marche, Ancona, Italy; Hematology, Università degli Studi di Bari, Bari, Italy; Department of Clinical and
Biological Sciences, University of Turin, Orbassano, Italy; Hematology, Presidio Ospedaliero Garibaldi-Nesima, Catania, Italy;
Oncology and Hematology Department, A.O. Silvestrini, Perugia, Italy; Hematology, A.O. SS Antonio e Biagio, Alessandria, Italy;
Hematology, IRCCS Fondazione Ca’ Granda and University, Milan, Italy; Department of Hematology/Oncology, Azienda
Ospedaliero Universitaria “San Martino”, Genova, Italy; IRCCS, Department of Onco-Hematology, Centro di Riferimento
Oncologico della Basilicata, Rionero in Vulture (Pz), Italy; Dep. Of Clinical and Experimental Medicine, Hematology Section,
Padua University School of Medicine, Padua, Italy; Hematology, A.O. Sant’Andrea, Roma, Italy; Department of Clinical and
Molecular Medicine, Università Sapienza medicina e psicologia, Roma, Italy
Received April 24, 2012; accepted May 21, 2012; Epub May 25, 2012; Published June 15, 2012
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 patient 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.
Keywords: Myelodysplastic syndromes, quality of life, comorbidities, anemia, transfusion-dependence, patient-reported
outcomes
Address all correspondence to:
Dr. Esther Oliva
Azienda Ospedaliera "Bianchi-Melacrino-Morelli"
Divisione Ematologia
Reggio Calabria, Italy.
Tel: +39 329-7978204
E-mail: estheroliva@hotmail.com
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