Surapolchai Pacharapan, Satayasai Wallee, Sinlapamongkolkul Phakatip, Udomsubpayakul Umaporn
Department of Pediatrics, Faculty of Medicine, Thammasat University, Pathumthani, Thailand.
J Med Assoc Thai. 2010 Dec;93 Suppl 7:S65-75.
To determine health-related quality of life (HRQOL) in children with thalassemia in order to explore physical and psychosocial factors affecting on their QOL.
A cross-sectional study was conducted at Thammasat University Hospital, Pathum Thani. Sociodemographic factors and clinical characteristics were obtained from seventy-five of transfusion-dependent and non-transfused thalassemia patients. The PedsQL 4.0 Generic Core Scales (Thai version) were administered to determine the patients and their parents' perspectives.
The mean (SD) of total HRQOL score was 78.50 (2.05) for children who were self-reporting and it was 73.41 (2.22) for parent proxy-report, that were comparable with population norms. The stepwise multiple regression analysis indicated that total HRQOL score of child self-report was negatively predicted by lower family income, early age onset of anemia before 2 years and under covered by Universal Health Coverage Scheme. The negative predictors of total HRQOL score of parent proxy-report were regular transfusion every 1-2 months, while self medical payment was positively predictive.
The HRQOL in children with thalassemia was not only determined by disease severity and treatment but also by family financial impacts for caring of children. Health care interventions should be implemented to support in various domains of life.
确定地中海贫血患儿的健康相关生活质量（HRQOL），以探究影响其生活质量的身体和社会心理因素。
在巴吞他尼府的法政大学医院进行了一项横断面研究。从75名依赖输血和未输血的地中海贫血患者中获取社会人口学因素和临床特征。采用儿童生活质量量表4.0通用核心量表（泰语版）来确定患者及其父母的观点。
儿童自我报告的HRQOL总分平均值（标准差）为78.50（2.05），父母代理报告的为73.41（2.22），与总体标准相当。逐步多元回归分析表明，家庭收入较低、2岁前贫血发病早且未纳入全民健康覆盖计划会对儿童自我报告的HRQOL总分产生负面预测。父母代理报告的HRQOL总分的负面预测因素是每1 - 2个月定期输血，而自费医疗则具有正向预测作用。
地中海贫血患儿的HRQOL不仅取决于疾病严重程度和治疗，还受到家庭照顾孩子的经济影响。应实施医疗保健干预措施，以在生活的各个领域提供支持。
