测量匈牙利心脏病儿童的健康相关生活质量：匈牙利版儿童生活质量问卷 4.0 通用核心量表和心脏模块的心理测量特性。
Measuring health-related quality of life in Hungarian children with heart disease: psychometric properties of the Hungarian version of the Pediatric Quality of Life Inventory 4.0 Generic Core Scales and the Cardiac Module.
机构信息
University of Debrecen Medical and Health Science Center, Department of Pediatrics, Nagyerdei krt, 98, Debrecen 4032, Hungary.
出版信息
Health Qual Life Outcomes. 2010 Jan 28;8:14. doi: 10.1186/1477-7525-8-14.
OBJECTIVES
The aim of the study was to investigate the psychometric properties of the Hungarian version of the Pediatric Quality of Life Inventory (PedsQL) Generic Core Scales and Cardiac Module.
METHODS
The PedsQL 4.0 Generic Core Scales and the PedsQL 3.0 Cardiac Module was administered to 254 caregivers of children (aged 2-18 years) and to 195 children (aged 5-18 years) at a pediatric cardiology outpatient unit. A postal survey on a demographically group-matched sample of the general population with 525 caregivers of children (aged 2-18 years) and 373 children (aged 5-18 years) was conducted with the PedsQL 4.0 Generic Core Scale. Responses were described, compared over subgroups of subjects, and were used to assess practical utility, distributional coverage, construct validity, internal consistency, and inter-reporter agreement of the instrument.
RESULTS
The moderate scale-level mean percentage of missing item responses (range 1.8-2.3%) supported the feasibility of the Generic Core Scales for general Hungarian children. Minimal to moderate ceiling effects and no floor effects were found on the Generic Core Scales. We observed stronger ceiling than floor effects in the Cardiac Module. Most of the scales showed satisfactory reliability with Cronbach's alpha estimates exceeding 0.70. Generally, moderate to good agreement was found between self- and parent proxy-reports in the patient and in the comparison group (intraclass correlation coefficient range 0.52-0.77), but remarkably low agreement in the perceived physical appearance subscale in the age group 5-7 years (0.18) and for the treatment II scale (problems on taking heart medicine) scale of the Cardiac Module in children aged 8-12 years (0.39). Assessing the construct validity of the questionnaires, statistically significant difference was found between the patient group and the comparison group only in the Physical Functioning Scale scores (p = 0.003) of the child self-report component, and in Physical (p = 0.022), Emotional, (p = 0.017), Psychosocial Summary (p = 0.019) scores and in the total HRQoL (health-related quality of life) scale score (p = 0.034) for parent proxy-report.
CONCLUSION
The findings generally support the feasibility, reliability and validity of the Hungarian translation of the PedsQL 4.0 Generic Core Scales and the PedsQL 3.0 Cardiac Module in Hungarian children with heart disease.
目的
本研究旨在调查匈牙利版儿科生活质量量表（PedsQL）通用核心量表和心脏模块的心理测量特性。
方法
在儿科心脏病门诊为 254 名 2-18 岁儿童的照顾者和 195 名 5-18 岁儿童（儿童）施测 PedsQL 4.0 通用核心量表和 PedsQL 3.0 心脏模块。对一般人群中年龄在 2-18 岁的 525 名儿童照顾者（儿童）和 373 名年龄在 5-18 岁的儿童进行了具有代表性的群组匹配的邮寄调查，调查内容为 PedsQL 4.0 通用核心量表。描述了应答情况，并按研究对象的亚组进行了比较，并用于评估该工具的实用性、分布范围、结构效度、内部一致性和报告者间一致性。
结果
适中的量表水平平均缺失项目应答百分比（范围为 1.8%-2.3%）支持匈牙利普通儿童通用核心量表的可行性。在通用核心量表上，发现最小到中等的天花板效应，没有地板效应。在心脏模块中，我们观察到更强的天花板效应比地板效应。大多数量表的克朗巴赫 α 估计值均超过 0.70，显示出良好的可靠性。一般来说，在患者组和对照组中，自我报告和家长代理报告之间的一致性通常在中等至较好之间（组内相关系数范围为 0.52-0.77），但在 5-7 岁年龄组的感知身体外观子量表（0.18）和心脏模块的治疗 II 量表（服用心脏药物的问题）（0.39）的一致性非常低。评估问卷的结构效度，仅在儿童自我报告部分的身体功能量表评分（p = 0.003）、身体（p = 0.022）、情感（p = 0.017）、心理社会综合（p = 0.019）评分和总 HRQoL（健康相关生活质量）量表评分（p = 0.034）方面，患者组与对照组之间存在统计学显著差异。
结论
这些发现总体上支持匈牙利语翻译的 PedsQL 4.0 通用核心量表和匈牙利语翻译的 PedsQL 3.0 心脏模块在匈牙利心脏病儿童中的可行性、可靠性和有效性。
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