Cheuk D K L, Mok A S P, Lee A C W, Chiang A K S, Ha S Y, Lau Y L, Chan G C F
Department of Pediatrics and Adolescent Medicine, Queen Mary Hospital, The University of Hong Kong, Hong Kong, China.
Bone Marrow Transplant. 2008 Sep;42(5):319-27. doi: 10.1038/bmt.2008.165. Epub 2008 Jun 16.
In this cross-sectional study, we compared the quality of life (QOL) in transfusion-dependent thalassemic patients who survived matched sibling hematopoietic SCT (HSCT, n=24) with patients treated conventionally with transfusion and iron chelation (n=74). WHOQOL-BREF(HK) and PedsQL questionnaires were administered to patients aged >18 years and 5-12 years, respectively. Patients aged 12-18 years received both questionnaires. WHOQOL-BREF(HK) revealed post transplant patients rated overall health better than those treated conventionally (score 3.67 vs 3.06, P=0.01). They are less dependent on medical aids (3.87 vs 2.96, P=0.006), having higher activity level (4.00 vs 3.36, P=0.026) and better personal relationships (4.13 vs 3.69, P=0.014). Physical health domain score was better (75.20 vs 63.94, P=0.007). These differences remained significant after adjustment for comorbidities. PedsQL revealed post transplant patients rated better for running (3.53 vs 2.72, P=0.001) and sports (3.20 vs 2.64, P=0.038), even after adjustment for comorbidities, but were less satisfied for school absence to attend hospital (2.53 vs 3.29, P=0.03). Post transplant patients were significantly more likely to consider marriage (100 vs 75.7%, P=0.033), but not childbearing (66.7 vs 51.4%, P=0.28). In conclusion, transplanted thalassemic patients enjoy better QOL, mainly in physical health, compared with conventionally treated patients. This information is important to patients considering HSCT.
在这项横断面研究中,我们比较了存活的匹配同胞造血干细胞移植(HSCT,n = 24)的输血依赖型地中海贫血患者与接受输血和铁螯合常规治疗的患者(n = 74)的生活质量(QOL)。分别向年龄大于18岁和5 - 12岁的患者发放世界卫生组织生活质量简表(WHOQOL - BREF)(香港版)和儿童生活质量量表(PedsQL)问卷。年龄在12 - 18岁的患者同时接受这两种问卷。WHOQOL - BREF(香港版)显示移植后患者对总体健康的评分高于常规治疗患者(得分3.67对3.06,P = 0.01)。他们对医疗辅助的依赖程度较低(3.87对2.96,P = 0.006),活动水平较高(4.00对3.36,P = 0.026),人际关系较好(4.13对3.69,P = 0.014)。身体健康领域得分更高(75.20对63.94,P = 0.007)。在对合并症进行调整后,这些差异仍然显著。PedsQL显示,即使在对合并症进行调整后,移植后患者在跑步(3.53对2.72,P = 0.001)和运动(3.20对2.64,P = 0.038)方面的评分更高,但对因住院缺课的满意度较低(2.53对3.29,P = 0.03)。移植后患者更有可能考虑结婚(100%对75.7%,P = 0.033),但在生育方面并非如此(66.7%对51.4%,P = 0.28)。总之,与常规治疗的患者相比,接受移植的地中海贫血患者的生活质量更好,主要体现在身体健康方面。这一信息对考虑进行HSCT的患者很重要。