Taha Murtadha Y, Hassan Meàad K
Department of Pediatrics, College of Medicine, University of Basra, Basra, Iraq.
J Pediatr Hematol Oncol. 2014 Apr;36(3):179-84. doi: 10.1097/MPH.0000000000000117.
The aim of this study was to assess health-related quality of life in hemophilic children and adolescents, and describe the impact of health status on quality of life.
The study included 45 patients with hemophilia A and B, their ages ranged from 4 to 16 years. Health-related quality of life was assessed by Hemophilia Quality of Life Questionnaire (Haemo-QOL) US-English long version for 3 age groups (I: 4 to 7; II: 8 to 12; and III: 13 to 16 y).
The study did not reveal a significant difference in the Hemophilia Quality of Life total score in relation to age of patients. However, young children are mainly impaired in the dimension family; children aged 8 to 12 years are mainly impaired in the dimension sport and adolescents in perceived support. Severity of hemophilia adversely affects the quality of life; patients with severe hemophilia have the highest total score of 58.51 ± 3.62, followed by moderate type 37.55 ± 5.37, and then mild hemophilia 35.47 ± 4.19, P<0.05. Among children with severe hemophilia, young children who had ≥ 5 joint bleeds during the last year have significant impairment in the total score and in several dimensions including physical health, feeling, and treatment compared with children who had <5 joint bleeds, P<0.05.
Severity of hemophilia adversely affects the quality of life, and clinical severity significantly affects quality of life among patients with severe hemophilia. Thus, the importance of prophylaxis is emphasized in improving the quality of life of our children with hemophilia.
本研究旨在评估血友病儿童和青少年与健康相关的生活质量,并描述健康状况对生活质量的影响。
该研究纳入了45例甲型和乙型血友病患者,年龄在4至16岁之间。采用血友病生活质量问卷(Haemo-QOL)美国英语长版对3个年龄组(I组:4至7岁;II组:8至12岁;III组:13至16岁)的与健康相关的生活质量进行评估。
研究未发现血友病生活质量总分与患者年龄之间存在显著差异。然而,幼儿主要在家庭维度受到损害;8至12岁的儿童主要在运动维度受到损害,青少年则在感知支持维度受到损害。血友病的严重程度对生活质量有不利影响;重度血友病患者的总分最高,为58.51±3.62,其次是中度患者,为37.55±5.37,轻度血友病患者为35.47±4.19,P<0.05。在重度血友病儿童中,与过去一年关节出血少于5次的儿童相比,过去一年关节出血≥5次的幼儿在总分以及包括身体健康、感觉和治疗在内的几个维度上有显著损害,P<0.05。
血友病的严重程度对生活质量有不利影响,临床严重程度显著影响重度血友病患者的生活质量。因此,强调了预防在改善我们血友病儿童生活质量方面的重要性。