Macran Susan, Birks Yvonne, Parsons Jonathan, Sloper Patricia, Hardman Geoff, Kind Paul, van Doorn Carin, Thompson David, Lewin Robert
Outcomes Research Group, Centre for Health Economics, United Kingdom.
Cardiol Young. 2006 Apr;16(2):165-72. doi: 10.1017/S1047951106000102.
The purpose of the study was to develop a questionnaire measuring health-related R1 quality of life for children and adolescents with congenital heart disease, the ConQol, that would have both clinical and research applications. We describe here the process of construction of a questionnaire, the piloting and the development of a weighted scoring system, and data on the psychometric performance of the measure in a sample of 640 children and young people recruited via 6 regional centres for paediatric cardiology from across the United Kingdom. The ConQol has two versions, one designed for children aged from 8 to 11 years, and the other for young people aged from 12 to 16 years. Initial findings suggest that it is a valid and reliable instrument, is acceptable to respondents, and is simple to administer in both a research and clinical context.
本研究的目的是开发一份用于测量先天性心脏病儿童和青少年与健康相关的生活质量的问卷，即先天性心脏病儿童生活质量问卷（ConQol），该问卷将兼具临床和研究应用价值。我们在此描述问卷的构建过程、预试验以及加权评分系统的开发，以及在通过英国6个地区儿科心脏病中心招募的640名儿童和青少年样本中该测量方法的心理测量学性能数据。ConQol有两个版本，一个针对8至11岁的儿童，另一个针对12至16岁的青少年。初步研究结果表明，它是一种有效且可靠的工具，受访者能够接受，并且在研究和临床环境中都易于实施。
