Waters Elizabeth, Davis Elise, Ronen Gabriel M, Rosenbaum Peter, Livingston Michael, Saigal Saroj
McCaughey Centre, VicHealth Centre for the Promotion of Mental Health and Community Wellbeing, School of Population Health, University of Melbourne, Melbourne, Australia.
Dev Med Child Neurol. 2009 Aug;51(8):660-9. doi: 10.1111/j.1469-8749.2009.03324.x.
There are many misconceptions about what constitutes 'quality of life' (QoL). It is often difficult for researchers and clinicians to determine which instruments will be most appropriate to their purpose. The aim of the current paper is to describe QoL instruments for children and adolescents with neurodisabilities against criteria that we think are important when choosing or developing a QoL instrument.
QoL instruments for children and adolescents with neurodisabilities were reviewed and described based on their purpose, conceptual focus, origin of domains and items, opportunity for self report, clarity (lack of ambiguity), potential threat to self-esteem, cognitive or emotional burden, number of items and time to complete, and psychometric properties.
Several generic and condition-specific instruments were identified for administration to children and adolescents with neurodisabilities - cerebral palsy, epilepsy and spina bifida, and hydrocephalus. Many have parent-proxy and self-report versions and adequate reliability and validity. However, they were often developed with minimal involvement from families, focus on functioning rather than well-being, and have items that may produce emotional upset.
As well as ensuring that a QoL instrument has sound psychometric properties, researchers and clinicians should understand how an instrument's theoretical focus will have influenced domains, items, and scoring.
对于什么构成“生活质量”（QoL）存在许多误解。研究人员和临床医生通常很难确定哪种工具最适合他们的目的。本文的目的是根据我们认为在选择或开发生活质量工具时重要的标准，描述针对神经残疾儿童和青少年的生活质量工具。
基于其目的、概念重点、领域和项目的来源、自我报告的机会、清晰度（无歧义）、对自尊的潜在威胁、认知或情感负担、项目数量和完成时间以及心理测量特性，对针对神经残疾儿童和青少年的生活质量工具进行了综述和描述。
确定了几种通用的和特定疾病的工具，用于对患有神经残疾（脑瘫、癫痫、脊柱裂和脑积水）的儿童和青少年进行评估。许多工具都有家长代理版和自我报告版，并且具有足够的信度和效度。然而，这些工具的开发往往很少有家庭参与，侧重于功能而非幸福感，并且有些项目可能会引起情绪困扰。
除了确保生活质量工具具有良好的心理测量特性外，研究人员和临床医生还应了解工具的理论重点将如何影响领域、项目和评分。
