瑞典青少年特发性关节炎患儿的健康相关生活质量：亲子差异、性别差异及与欧洲队列的比较
Health-related quality of life among Swedish children with Juvenile Idiopathic Arthritis: parent-child discrepancies, gender differences and comparison with a European cohort.
作者信息
Lundberg Veronica, Eriksson Catharina
机构信息
Department of Clinical Sciences, Pediatrics, Umeå University, SE 901 85, Umeå, Sweden.
出版信息
Pediatr Rheumatol Online J. 2017 Apr 12;15(1):26. doi: 10.1186/s12969-017-0153-5.
BACKGROUND
This study investigates gender differences in self-reports and between parent and child reports in Health-related Quality of Life (HRQOL), measured with disease-specific and generic instruments for chronic disease. Comparison of HRQOL results in this Juvenile Idiopathic Arthritis (JIA) sample to a European cohort of children with JIA and one of children with other health conditions are also made.
METHODS
Fifty-three children with juvenile idiopathic arthritis (JIA), aged 8-18 years, and their parents completed the condition-specific DISABKIDS for JIA, and the DISABKIDS generic instrument for chronic conditions (DCGM-37) in a cross-sectional study. European reference data were used for comparison of child and parental reports.
RESULTS
Child self-reports in DCGM-37 and DISABKIDS for JIA showed no gender differences. Parental and child reports of the child's HRQOL differed only in DCGM-37; this was among girls who scored their independence (p = 0.03), physical limitation (p = 0.01), social exclusion (p = 0.03), emotions (p <0.01), and general transformed score (p <0.01) higher than did their parents. Our sample of children with JIA reported more physical limitation compared to samples of European children with JIA (p = 0.01), European children with chronic conditions (p < 0.01), and their parents (p = 0.01 and p < 0.01). The Swedish children reported more problem with understanding compared to the European JIA sample (p = 0.03). Swedish parents perceived their children's independence significantly lower than did the European parents of JIA children (p < 0.01), as well as European parents of children with chronic conditions (p = 0.03). The Swedish parents also perceived their children to have significantly lower social inclusion (p < 0.05) and general transformed score (p = 0.04), in comparison to European parents of children with chronic conditions.
CONCLUSIONS
Parent-child differences in assessment of quality of life depend on the HRQOL instrument used, especially among girls. In comparison to European cohorts, our sample of children with JIA experienced more physical limitations and less understanding.
背景
本研究调查了在使用针对慢性病的疾病特异性和通用工具测量的健康相关生活质量（HRQOL）方面，自我报告以及父母与孩子报告之间的性别差异。还将该青少年特发性关节炎（JIA）样本中的HRQOL结果与一组欧洲JIA儿童样本以及一组患有其他健康状况的儿童样本进行了比较。
方法
在一项横断面研究中，53名年龄在8至18岁之间的青少年特发性关节炎（JIA）患儿及其父母完成了针对JIA的特定疾病的儿童残疾评定量表（DISABKIDS for JIA）以及针对慢性病的儿童残疾评定通用量表（DCGM - 37）。使用欧洲参考数据对儿童和父母的报告进行比较。
结果
DCGM - 37和针对JIA的DISABKIDS中的儿童自我报告未显示出性别差异。父母和孩子对孩子HRQOL的报告仅在DCGM - 37中存在差异；在独立性（p = 0.03）、身体限制（p = 0.01）、社会排斥（p = 0.03）、情绪（p <0.01）和总体转换得分（p <0.01）方面得分高于父母的女孩中存在这种差异。与欧洲JIA儿童样本（p = 0.01）、患有慢性病的欧洲儿童样本（p <0.01）及其父母（p = 0.01和p <0.01）相比，我们的JIA患儿样本报告的身体限制更多。与欧洲JIA样本相比，瑞典儿童在理解方面报告的问题更多（p = 0.03）。瑞典父母认为他们孩子的独立性明显低于欧洲JIA患儿的父母（p <0.01），也低于患有慢性病儿童的欧洲父母（p = 0.
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