Badia Llach X, Benavides Ruiz A, Rajmil Rajmil L
Outcomes Research Unit. Servicio de Epidemiología Clínica y Salud Pública. Hospital de la Santa Creu i Sant Pau. Barcelona.
An Esp Pediatr. 2001 Mar;54(3):213-21.
Measures of health-related quality of life (HRQOL) are proving to be useful in providing a comprehensive evaluation of illness and its effects on patients' daily lives. The aim of this review is to describe HRQOL instruments that are currently available to measure the HRQOL in children and adolescents with asthma.
The MEDLINE database from 1980to 2000was reviewed, as well as the website of the American Thoracic Society and the Quality of Life Research journal. Studies that included instruments measuring HRQOL in children with asthma were included as long as the instruments included met the selection criteria of multidimensionality, scoring was through standardized ordinal scales and psychometric properties were evaluated.
Of the 21instruments initially identified 7were excluded because they did not meet one or more of the selection criteria. Fourteen instruments were included in the final review, 6were generic instruments for children (CHQ, KINDL, PedsQL, FS-IIR, RAND and CHIP-AE) and eight were specific to children with asthma (SSES, ASDQ, AMA, CAQ, LAQCA, PACQLQ, PAQLQ and APBC). The generic instruments measured the four basic aspects of HRQOL (symptoms, physical, mental and social functioning), whilst the majority of the specific instruments focused more closely on symptom measurement and physical functioning. Reliability (Cronbach's alpha) and construct validity were the most widely tested psychometric properties. In general, sensitivity to change was the least widely tested property, and only three disease-specific instruments were sensitive to change (LAQCQ, PACQLQ and PAQLQ). All the instruments could be self-administered. Only two of the generic instruments (FS-IIR and RAND) had been validated for use in Spain. At present two more generic instruments (PedsQL and CHIP-AE) and two specific instruments (PACQLQ and PAQLQ) are currently being validated.
The availability of instruments to measure the HRQOL of children with asthma in Spain is currently limited. Validated versions of the PedsQL (generic) and PAQLQ (specific) instruments, both of which have been demonstrated to be useful in other countries, should shortly be available to measure the HRQOL of children with asthma in Spain.
健康相关生活质量（HRQOL）测量方法在全面评估疾病及其对患者日常生活的影响方面已被证明是有用的。本综述的目的是描述目前可用于测量哮喘儿童和青少年HRQOL的工具。
检索了1980年至2000年的MEDLINE数据库，以及美国胸科学会网站和《生活质量研究》杂志。只要所纳入的测量哮喘儿童HRQOL的工具符合多维性选择标准、通过标准化序数量表评分且心理测量学特性得到评估，就纳入相关研究。
最初确定的21种工具中有7种因未满足一项或多项选择标准而被排除。最终综述纳入了14种工具，6种是儿童通用工具（CHQ、KINDL、PedsQL、FS-IIR、RAND和CHIP-AE），8种是哮喘儿童专用工具（SSES、ASDQ、AMA、CAQ、LAQCA、PACQLQ、PAQLQ和APBC）。通用工具测量HRQOL的四个基本方面（症状、身体、心理和社会功能），而大多数专用工具更侧重于症状测量和身体功能。信度（克朗巴哈系数）和结构效度是测试最广泛的心理测量学特性。一般来说，对变化的敏感性是测试最少的特性，只有三种疾病专用工具对变化敏感（LAQCQ、PACQLQ和PAQLQ）。所有工具都可自行使用。只有两种通用工具（FS-IIR和RAND）在西班牙经过验证。目前另外两种通用工具（PedsQL和CHIP-AE）以及两种专用工具（PACQLQ和PAQLQ）正在进行验证。
目前西班牙可用于测量哮喘儿童HRQOL的工具有限。PedsQL（通用）和PAQLQ（专用）工具的验证版本在其他国家已被证明是有用的，不久将可用于测量西班牙哮喘儿童的HRQOL。
