慢性病患儿生活质量测量方法综述。
A review of measures of quality of life for children with chronic illness.
作者信息
Eiser C, Morse R
机构信息
CRC Child and Family Research Group, Department of Psychology, University of Sheffield, Sheffield S10 2TP, UK.
出版信息
Arch Dis Child. 2001 Mar;84(3):205-11. doi: 10.1136/adc.84.3.205.
AIMS
To identify currently available generic and disease specific measures of quality of life (QoL) for work with children; and make recommendations about the future development and application of QoL measures.
METHODS
Systematic searches were conducted to identify measures of QoL. Primary research papers were coded by the authors on the basis of predefined inclusion and exclusion criteria.
RESULTS
Of the 137 papers included in the review, 43 involved the development of a new measure. These included 19 generic and 24 disease specific measures. Almost half the measures were developed in the USA. Measures were identified which were appropriate for children across a broad age range, and included provision for completion by different respondents (child only, parent only, or both). There were no clear distinctions between measures of QoL, health, or functional status.
CONCLUSIONS
We have identified a small number of measures which fulfil basic requirements and could be used to assess QoL in clinical trials or following interventions. However, there remain a number of problems in measuring QoL in children. These include limited availability of disease specific measures; discrepancies between child and parent ratings; limited availability of measures for self completion by children; lack of precision regarding the content of domains of QoL; and the cultural appropriateness of measures developed elsewhere for children in the UK.
目的
确定目前可用于儿童工作的通用和特定疾病的生活质量（QoL）测量方法；并就QoL测量方法的未来发展和应用提出建议。
方法
进行系统检索以确定QoL测量方法。作者根据预先定义的纳入和排除标准对主要研究论文进行编码。
结果
在纳入综述的137篇论文中，43篇涉及新测量方法的开发。其中包括19种通用测量方法和24种特定疾病测量方法。几乎一半的测量方法是在美国开发的。确定了适用于广泛年龄段儿童的测量方法，并包括由不同受访者（仅儿童、仅家长或两者）完成的规定。QoL、健康或功能状态的测量方法之间没有明显区别。
结论
我们已经确定了少数满足基本要求的测量方法，可用于评估临床试验或干预后的QoL。然而，在测量儿童QoL方面仍然存在一些问题。这些问题包括特定疾病测量方法的可用性有限；儿童和家长评分之间的差异；儿童自行完成测量方法的可用性有限；QoL领域内容的精确性不足；以及其他地方为英国儿童开发的测量方法的文化适宜性。
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