Evaluation of the Greek TranQol: a novel questionnaire for measuring quality of life in transfusion-dependent thalassemia patients

被引:13
作者
Klonizakis, Philippos [1 ]
Klaassen, Robert [2 ]
Sousos, Nikolaos [1 ]
Liakos, Aris [3 ,4 ]
Tsapas, Apostolos [3 ,4 ]
Vlachaki, Efthymia [1 ]
机构
[1] Aristotle Univ Thessaloniki, Adults Thalassemia Unit, Dept Internal Med 2, Hippokrat Gen Hosp Thessaloniki, 49 Konstantinoupoleos St, Thessaloniki 54642, Greece
[2] Univ Ottawa, Childrens Hosp Eastern Ontario, Dept Pediat, Div Hematol Oncol, Ottawa, ON, Canada
[3] Aristotle Univ Thessaloniki, Dept Internal Med 2, Hippokrat Gen Hosp Thessaloniki, Thessaloniki, Greece
[4] Aristotle Univ Thessaloniki, Clin Res & Evidence Based Med Unit, Thessaloniki, Greece
关键词
Quality of life; Beta-thalassemia major; Transfusion-dependent thalassemia; Patient-reported outcome measures; HEALTH-STATUS QUESTIONNAIRES; BETA-THALASSEMIA; RELIABILITY; DISORDERS; CHILDREN;
D O I
10.1007/s00277-017-3122-7
中图分类号
R5 [内科学];
学科分类号
1002 ; 100201 ;
摘要
The aim of our study was to evaluate the Greek version of the transfusion-dependent quality of life (TranQol) questionnaire and report our experience of using this novel disease-specific quality of life (QoL) measure in patients with transfusion-dependent thalassemia (TDT). The TranQol and SF-36v2 questionnaires were administered to 94 adult TDT patients with a mean age of 32.1 years (SD = 7, range = 19-58), recruited from the Adult Thalassemia Unit of Hippokration General Hospital of Thessaloniki, Greece. The TranQol was evaluated in terms of construct validity, reliability, and responsiveness. There was a moderately strong correlation between the TranQol summary and both the SF-36v2 physical and mental component summaries (r = 0.4, p < 0.001 and r = 0.5, p < 0.001, respectively). There was also a moderately strong correlation between the physical health scale of TranQol and the relevant SF-36v2 scales, including physical functioning (r = 0.4, p < 0.001), role-physical (r = 0.6, p < 0.001), and bodily pain (r = 0.5, p < 0.001). TranQol also exhibited good internal consistency (Cronbach's alpha coefficient = 0.9) and excellent test-retest reliability (intra-class correlation coefficient = 0.9). The subgroup of patients that reported a better QoL 1 week after transfusion also demonstrated a significant improvement in their TranQol score. These are the first data regarding the administration of the Greek TranQol in a single thalassemia unit. The psychometric properties of the Greek TranQol confirmed it is a valid, reliable, and responsive to change questionnaire, which can be incorporated into future clinical trials.
引用
收藏
页码:1937 / 1944
页数:8
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