Thavorncharoensap Montarat, Torcharus Kitti, Nuchprayoon Issarang, Riewpaiboon Arthorn, Indaratna Kaemthong, Ubol Bang-On
Department of Pharmacy, Faculty of Pharmacy, Mahidol University, Bangkok, Thailand.
BMC Blood Disord. 2010 Jan 21;10:1. doi: 10.1186/1471-2326-10-1.
Knowledge of the factors associated with health-related quality of life (HRQOL) among patients with thalassemia is essential in developing more suitable clinical, counseling, and social support programs to improve treatment outcomes of these patients. In light of the limited research in this area, this study aims to examine factors associated with HRQOL among children and adolescents with thalassemia in Thailand.
A cross-sectional survey was conducted in three selected hospitals in Thailand during June to November 2006. PedsQL 4.0 Generic Core Scale (Thai version) was used to assess HRQOL in 315 thalassemia patients between 5 and 18 years of age. Other related clinical characteristics of the patients were collected via medical record review.
The mean (SD) of the total summary score was 76.67 (11.40), while the means (SD) for the Physical Health Summary score and Psychosocial Health Summary score were 78.24 (14.77) and 75.54 (12.76), respectively. The school functioning subscale scored the lowest, with a mean of 67.89 (SD = 15.92). The following factors significantly affected the HRQOL of the patients: age; age at onset of anemia and age at first transfusion; pre-transfusion hemoglobin (Hb) level; receiving a blood transfusion during the previous three months; and disease severity. In addition, iron chelation therapy had a significant negative effect on HRQOL in the school functioning subscale. In contrast, serum ferritin level, frequency of blood transfusions per year, and gender were not significantly related to HRQOL among these patients. The results from multivariate analysis also confirmed these findings.
To improve HRQOL of thalassemia patients, suitable programs aimed at providing psychosocial support and a link between the patient, school officials, the family and the physician are important, especially in terms of improving the school functioning score. The findings also confirmed the importance of maintaining a pre-transfusion Hb level of at least 9-10.5 g/dL. In addition, special care and attention should be given to patients with a severe condition, and those who are receiving subcutaneous iron chelation therapy.
了解地中海贫血患者中与健康相关生活质量（HRQOL）相关的因素，对于制定更合适的临床、咨询和社会支持项目以改善这些患者的治疗效果至关重要。鉴于该领域研究有限，本研究旨在调查泰国儿童和青少年地中海贫血患者中与HRQOL相关的因素。
2006年6月至11月期间，在泰国选定的三家医院进行了一项横断面调查。使用儿童生活质量量表4.0通用核心量表（泰语版）对315名5至18岁的地中海贫血患者的HRQOL进行评估。通过病历审查收集患者的其他相关临床特征。
总总结得分的平均值（标准差）为76.67（11.40），而身体健康总结得分和心理社会健康总结得分的平均值（标准差）分别为78.24（14.77）和75.54（12.76）。学校功能子量表得分最低，平均值为67.89（标准差 = 15.92）。以下因素对患者的HRQOL有显著影响：年龄；贫血发病年龄和首次输血年龄；输血前血红蛋白（Hb）水平；前三个月内接受输血；以及疾病严重程度。此外，铁螯合疗法对学校功能子量表的HRQOL有显著负面影响。相比之下，血清铁蛋白水平、每年输血频率和性别与这些患者的HRQOL无显著相关性。多变量分析结果也证实了这些发现。
为改善地中海贫血患者的HRQOL，旨在提供心理社会支持以及在患者、学校官员、家庭和医生之间建立联系的合适项目很重要，特别是在提高学校功能得分方面。研究结果还证实了将输血前Hb水平维持在至少9 - 10.5 g/dL的重要性。此外，应特别关注病情严重的患者以及接受皮下铁螯合疗法的患者。
