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埃及甲型血友病儿童和青少年的健康相关生活质量

Health-related quality of life in Egyptian children and adolescents with hemophilia A.

作者信息

Tantawy Azza A G, Mackensen Sylvia Von, El-Laboudy Mohammed A M, Labib Jonair H, Moftah Faten, El-Telbany Manal A S, Mansour Wesam A A

机构信息

Ain Shams University, Cairo, Egypt.

出版信息

Pediatr Hematol Oncol. 2011 Apr;28(3):222-9. doi: 10.3109/08880018.2010.535116. Epub 2011 Jan 27.

Abstract

Quality of life (QoL) in hemophilia is an important area in hemophilia outcome assessment. The Haemo-QoL instrument is a set of questionnaires to measure QoL in those children. The objectives of this study was to assess health-related quality of life (HRQoL) in Egyptian hemophilic children and adolescents using an Arabic version of the Haemo-QoL questionnaire. Sixty patients with severe hemophilia A were recruited from 2 hemophilia treating centers in Egypt. Assessment of quality of life was done using the Haemo-QoL questionnaire. The scores of HRQoL were found to be for all dimensions widely above 50. It was highly significant in the 3 dimensions (physical health-family-treatment) in different age groups, but it was impaired in the dimension of "physical health" for 2 groups, and in the dimension of "family" for the oldest group, whereas the youngest group had highly impaired scores concerning the "treatment." The HRQoL in this study was not affected by the presence of factor VIII (FVIII) inhibitors. The QoL in hemophilic patients in Egypt needs strenuous efforts from hemophilia care-integrated teams of pediatric hematologists and psychiatrists in order to properly assess and improve QoL.

摘要

血友病患者的生活质量(QoL)是血友病治疗效果评估中的一个重要领域。Haemo-QoL工具是一套用于测量这些儿童生活质量的问卷。本研究的目的是使用Haemo-QoL问卷的阿拉伯语版本评估埃及血友病儿童和青少年的健康相关生活质量(HRQoL)。从埃及的2个血友病治疗中心招募了60名重度甲型血友病患者。使用Haemo-QoL问卷进行生活质量评估。发现HRQoL在所有维度上的得分普遍高于50。在不同年龄组的3个维度(身体健康-家庭-治疗)中具有高度显著性,但在2个组的“身体健康”维度以及最年长组的“家庭”维度中存在受损情况,而最年幼组在“治疗”维度的得分受损程度很高。本研究中的HRQoL不受凝血因子VIII(FVIII)抑制剂的影响。埃及血友病患者的生活质量需要儿科血液学家和精神科医生组成的血友病综合护理团队做出巨大努力,以便正确评估和改善生活质量。

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