科研之友
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摘要
Objectives: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.Methods: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).Results: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 58.513.62, 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.Conclusions: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.
- 出版日期2014-4
