Department of Clinical Sciences, Pediatrics, Umeå University, Umeå, Sweden.
Pediatr Rheumatol Online J. 2012 Sep 17;10(1):33. doi: 10.1186/1546-0096-10-33.
Juvenile Idiopathic Arthritis (JIA) affects children and adolescents with both short-term and long-term disability. These children also report lower health-related quality of life (HRQOL) compared to their healthy peers. However, there seems to be some discrepancies between self- and parent-reports, and gender differences need to be further studied. This study aims to describe HRQOL in girls and boys with JIA, and to explore gender differences in self-reports compared to parent-reports of HRQOL in children with JIA.
Fifty-three children and adolescents with JIA (70% girls and 30% boys) with a median age of 14 years (8-18 years), and their parents, participated in this cross-sectional study in Sweden. Data was systematically collected prior to ordinary visits at a Pediatric outpatient clinic, during a period of 16 months (2009-2010). Disability was assessed with the Childhood Health Assessment Questionnaire (CHAQ), and disease activity by physicians' assessments and Erythrocyte Sedimentation Rate (ESR). The Pediatric Quality of Life Inventory 4.0 Generic Core Scales (PedsQL) was used to assess self- and parent-reports of HRQOL in the child.
In this sample of children with generally low disease activity and mild to moderate disability, more than half of the children experienced suboptimal HRQOL, equally in girls and boys. Significant differences between self- and parent-reports of child HRQOL were most evident among girls, with lower parent-reports regarding the girl's physical- and psychosocial health as well as in the total HRQOL score. Except for the social functioning subscale, where parents' reports were higher compared to their sons, there were no significant differences between boys- and parent-reports.
More than half of the girls and boys experienced suboptimal HRQOL in this sample, with no gender differences. However, there were differences between self- and parent-reports of child HRQOL, with most significant differences found among the girls. Thus, differences between self- and parent-reports of child HRQOL must be taken into account in clinical settings, especially among girls with JIA.
幼年特发性关节炎（JIA）影响儿童和青少年，导致其短期和长期残疾。与健康同龄人相比，这些儿童的健康相关生活质量（HRQOL）也较低。然而，自我报告和父母报告之间似乎存在一些差异，并且需要进一步研究性别差异。本研究旨在描述 JIA 女孩和男孩的 HRQOL，并探讨 JIA 儿童自我报告与父母报告的 HRQOL 之间的性别差异。
本横断面研究纳入了 53 名 JIA 儿童和青少年（70%为女孩，30%为男孩），年龄中位数为 14 岁（8-18 岁），他们的父母参与了这项在瑞典进行的研究。在 16 个月的时间里（2009-2010 年），在儿科门诊就诊前系统地收集了数据。使用儿童健康评估问卷（CHAQ）评估残疾程度，使用医生评估和红细胞沉降率（ESR）评估疾病活动度。使用儿科生活质量问卷 4.0 通用核心量表（PedsQL）评估儿童的自我报告和父母报告的 HRQOL。
在这个疾病活动度低、残疾程度轻中度的儿童样本中，超过一半的儿童经历了 HRQOL 不佳，女孩和男孩的情况相似。自我报告和父母报告的儿童 HRQOL 之间存在显著差异，在女孩中最为明显，女孩的生理和心理社会健康以及总 HRQOL 评分的父母报告较低。除了社会功能子量表，父母报告的得分高于儿子外，男孩和父母报告之间没有显著差异。
在这个样本中，超过一半的女孩和男孩经历了 HRQOL 不佳，没有性别差异。然而，自我报告和父母报告的儿童 HRQOL 之间存在差异，在女孩中最为明显。因此，在临床实践中，特别是在患有 JIA 的女孩中，必须考虑儿童 HRQOL 的自我报告和父母报告之间的差异。
