Assessment of health status in patients with cerebral palsy - What is the role of quality-of-life measures?
Assessment of health status in patients with cerebral palsy - What is the role of quality-of-life measures?
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DOI：
10.1097/01.bpo.0000164870.26632.6b
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发表时间：
2005-11-01
影响因子：
1.7
通讯作者：
Roye, DP
中科院分区：
文献类型：
--
作者：
Vitale, MG;Roye, EA;Roye, DP
在功能范围与小儿脑瘫人群一样大的人群中测量生活质量（QOL）是具有挑战性的。本研究评估了两种常见的生活质量工具在该人群中的效用：儿童健康问卷（CHQ）和儿科结局数据收集工具（PODCI）。目的是确定这些问卷在检测脑瘫儿童生活质量的细微差异方面的有效性，并证明在评估该组儿童生活质量时需要进行动态评估。共有180名年龄在5至18岁之间的受试者，分为三个诊断组——双瘫、偏瘫和四肢瘫痪。PODCI对双瘫组和偏瘫组的差异更敏感，但四肢瘫痪者在五个领域中的三个领域表现出地板效应（50%或更多，满分为100分）。CHQ对四肢瘫痪组更有效，但在该问卷的12个领域中，双瘫和偏瘫诊断组在2个领域表现出天花板效应。由于使用动态评估的仪器是根据患者对第一个问题的反应来确定后续问题的，因此动态评估可以通过询问与患者实际情况更相关的问题来帮助避免天花板和地板效应，并且可以节省浪费在回答有关功能和生活质量的无关问题上的时间。
Measuring quality of life (QOL) in a Population with a functional range as large as that of the pediatric cerebral palsy population is challenging. This study assessed the utility of two common QOL instruments in this population: the Child Health Questionnaire (CHQ) and the Pediatric Outcomes Data Collection Instrument (PODCI). The goal was to determine the efficacy of these questionnaires in detecting subtle differences in the QOL among children with cerebral palsy and to demonstrate the need for dynamic assessment when evaluating QOL within this group. There were 180 Subjects between the ages of 5 and 18 years, split into three diagnostic groups-diplegic, hemiplegic, and quadriplegic. The PODCI was more sensitive to differences in the diplegic and hemiplegic groups, but quadriplegics exhibited a floor effect (50% or more scored at most 15 out of 100) in three of the five domains. The CHQ was more effective for the quadriplegic group, but the diplegic and hemiplegic diagnostic groups exhibited a ceiling effect on 2 of the 12 domains in that questionnaire. Because an instrument that uses dynamic assessment bases subsequent questions on the patient's response to the first ones, dynamic assessment Would help to avoid ceiling and floor effects by asking questions more pertinent to the patients actual condition, and it would save time that would have been wasted answering irrelevant questions about function and QOL.