Oliva Esther Natalie, Finelli Carlo, Santini Valeria, Poloni Antonella, Liso Vincenzo, Cilloni Daniela, Impera Stefana, Terenzi Adelmo, Levis Alessandro, Cortelezzi Agostino, Ghio Riccardo, Musto Pellegrino, Semenzato Gianpietro, Clissa Cristina, Lunghi Teresa, Trappolini Silvia, Gaidano Valentina, Salvi Flavia, Reda Gianluigi, Villani Oreste, Binotto Gianni, Cufari Patrizia, Cavalieri Elena, Spiriti Maria Antonietta Aloe
Am J Blood Res. 2012;2(2):136-47. Epub 2012 May 25.
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.
检测与骨髓增生异常综合征（MDS）患者生活质量（QOL）相关的因素，并比较MDS患者自我评估的生活质量与其医生所感知的生活质量。在一项观察性、非干预性、前瞻性、多中心研究中，对148例新诊断的低危和中危国际预后评分系统（IPSS）MDS患者的生活质量进行了评估。对生活质量测量指标（QOL-E v.2、LASA和EQ-5D）以及与患者相关的生活质量候选决定因素进行了长达18个月的评估。将患者的生活质量评分与指定血液科医生评估所得的评分以及东部肿瘤协作组（ECOG）体能状态（PS）进行比较。诊断时疲劳并不普遍，尽管身体生活质量和能量水平较低。依赖输血的患者生活质量评分更差。多变量分析显示，血红蛋白水平和合并症是生活质量的主要决定因素。医生对患者健康状况的认知与患者的生活质量相关。医生低估了干扰因素对患者生活质量的影响，主要是在MDS特异性组成部分方面。ECOG PS不能根据生活质量状态区分患者。总之，贫血与生活质量的关联得到证实，而合并症成为MDS患者生活质量的独立预测因素。疲劳不是主要问题。ECOG PS不是患者生活质量的有效替代指标，因此强调医生对患者健康状况的判断不能替代患者报告的结果。应使用适当的问卷来评估MDS患者的生活质量，以改善沟通和治疗选择。
