血友病儿童生活质量及其影响因素分析

目的:了解血友病儿童的生活质量(QOL)及其可能的影响因素.方法:男性血友病患儿60例及其家长,均采用中文版儿童生活质量测定量表(PedsQL)4.0评价其QOL.结果:60例血友病患儿的PedsQL总分及各单项评分家长评分均高于儿童自评得分(均P＜0.05).患儿QOL评分尤其是生理功能项的评分与患儿的年龄呈正相关(均P＜0.05).结论:血友病患儿家长对其生活质量的满意度较患儿自身低；患儿年龄越大,生活质量尤其是生理功能下降越明显,应进行早期干预和充分治疗.

Quality of life and related impact factors in children with hemophilia

Objective:To investigate the quality of life (QOL) and related impact factors in children with hemophilia.Methods:Sixty boys with hemophilia and their householders were assessed by the Chinese pediatric quality of life inventory measurement models (PedsQL)4.0.Results:The total and sub-item scores of PedsQL 4.0 in the householders were significantly higher than in children with hemophilia (all P<0.05).There was a positive correlation between ages of children and their scores of PedsQL4.0,especially the scores of physical functioning (all P<0.05).Conclusion:The satisfaction degree of the householders is lower than that of the children with hemophilia.The older the children are,the lower their QOL scores are,especially physical function.Children with hemophilia should be controlled earlier and treated sufficiently.