Department of Pediatrics, Dokuz Eylul University Hospital, Izmir, Turkey.
Clin Exp Rheumatol. 2009 Mar-Apr;27(2 Suppl 53):S96-101.
To describe and compare the parent proxy-reported and child self-reported physical and psychosocial HRQOL of school age children who have FMF with healthy peers.
The Pediatric Quality of Life Inventory 4.0 (Peds QL 4.0) Generic Core Scales was used to measure HR-QOL. Fifty-one patients and 81 healthy peers were enrolled in the study. Patients were grouped according to their ages as : 1) Children (8-12 years) and 2) Adolescents (13-18 years). An accompanying parent completed the parent proxy-report of the Peds QL 4.0.
Peds QL scores of children (8-12 years) with FMF were significantly lower than healthy peers for physical and psychosocial functioning for both child self-report and parent proxy-report. The parent proxy-report and child self-reported Peds QL scores of adolescent patients (13-18 years) with FMF were lower than the healthy group for physical, emotional and school functioning; however no significant difference was detected regarding the social functioning. Adolescents with FMF had significantly higher social scores when compared to the younger age group (8-12 years) with FMF, 92.6 +/- 8.5 and 82.2 +/- 17.6, respectively (p=0.028). The scores of physical, emotional and school functioning were similar in both groups (p=0.73, p=0.93, and p=0.028). Correlations among child self-report subscales and proxy-report subscales were all significant and varied from moderate to high.
This study suggested that assessment of HRQOL has potential clinical implications for the healthcare needs of children and adolescents with FMF. Given the degree of reported impairment in their health-related quality of life, individualized counseling and interventions are needed.
描述并比较患有纤维肌痛综合征(FMF)的学龄儿童与健康同龄人的父母代理报告和儿童自我报告的身体和心理社会健康相关生活质量(HRQOL)。
使用儿童生活质量问卷 4.0 (PedsQL4.0)通用核心量表来测量 HR-QOL。本研究纳入了 51 名患者和 81 名健康同龄人。根据年龄将患者分为:1)儿童(8-12 岁)和 2)青少年(13-18 岁)。同时,一位陪同的家长完成了 PedsQL4.0 的父母代理报告。
FMF 患儿(8-12 岁)的 PedsQL 评分在身体和心理社会功能方面,无论是儿童自我报告还是父母代理报告,均显著低于健康同龄人。FMF 青少年患者(13-18 岁)的父母代理报告和儿童自我报告的 PedsQL 评分在身体、情感和学业功能方面均低于健康组;然而,在社交功能方面未检测到显著差异。与年龄较小的 FMF 患儿(8-12 岁)相比,FMF 青少年的社交评分显著更高,分别为 92.6±8.5 和 82.2±17.6(p=0.028)。两组在身体、情感和学业功能方面的评分相似(p=0.73,p=0.93,p=0.028)。儿童自我报告子量表与代理报告子量表之间的相关性均显著,且从中度到高度不等。
本研究表明,HRQOL 的评估对纤维肌痛综合征患儿和青少年的医疗保健需求具有潜在的临床意义。鉴于他们的健康相关生活质量报告受损程度,需要进行个性化的咨询和干预。