Klonizakis Philippos, Roy Noémi, Papatsouma Ioanna, Mainou Maria, Christodoulou Ioanna, Pantelidou Despina, Kokkota Smaro, Diamantidis Michael, Kourakli Alexandra, Lazaris Vasileios, Andriopoulos Dimitrios, Tsapas Apostolos, Klaassen Robert J, Vlachaki Efthymia
Adults Thalassemia Unit-2nd Department of Internal Medicine, Aristotle University, Hippokration General Hospital Thessaloniki, 54642 Thessaloniki, Greece.
Department of Haematology, Oxford University Hospitals, NHS Foundation Trust, Oxford OX3 0AG, UK.
Healthcare (Basel). 2024 Feb 22;12(5):524. doi: 10.3390/healthcare12050524.
The assessment of health-related quality of life (HRQoL) in thalassemia offers a holistic approach to the disease and facilitates better communication between physicians and patients. This study aimed to evaluate the HRQoL of transfusion-dependent thalassemia (TDT) patients in Greece. This was a multicentric, cross-sectional study conducted in 2017 involving 283 adult TDT patients. All participants completed a set of two QoL questionnaires, the generic SF-36v2 and the disease-specific TranQol. Demographic and clinical characteristics were used to predefine patient subgroups. Significant factors identified in the univariate analysis were entered into a multivariate analysis to assess their effect on HRQoL. The SF-36 scores of TDT patients were consistently lower compared to the general population in Greece. The mean summary score of TranQol was relatively high (71 ± 14%), exceeding levels observed in national surveys in other countries. Employment emerged as the most significant independent factor associated with better HRQoL, whereas age had the most significant negative effect. This study represents the first comprehensive QoL assessment of a representative sample of the TDT population in Greece. The implementation of TranQol allowed for the quantification of HRQoL in Greece, establishing a baseline for future follow-up, and identifying more vulnerable patient subgroups.
地中海贫血患者健康相关生活质量（HRQoL）的评估为该疾病提供了一种全面的方法，并促进了医生与患者之间更好的沟通。本研究旨在评估希腊依赖输血的地中海贫血（TDT）患者的HRQoL。这是一项于2017年开展的多中心横断面研究，涉及283名成年TDT患者。所有参与者均完成了一套两份生活质量问卷，即通用的SF-36v2问卷和特定疾病的TranQol问卷。人口统计学和临床特征用于预先定义患者亚组。单因素分析中确定的显著因素被纳入多因素分析，以评估它们对HRQoL的影响。与希腊普通人群相比，TDT患者的SF-36评分始终较低。TranQol的平均总结评分为相对较高（71±14%），超过了其他国家全国性调查中观察到的水平。就业成为与更好的HRQoL相关的最显著独立因素，而年龄产生的负面影响最为显著。本研究是对希腊TDT人群代表性样本的首次全面生活质量评估。TranQol的应用使得希腊HRQoL的量化成为可能，为未来的随访建立了基线，并识别出更脆弱的患者亚组。
