Bullinger Monika, Schmidt Silke, Petersen Corinna
Department of Medical Psychology, University Hamburg, Germany.
Int J Rehabil Res. 2002 Sep;25(3):197-206. doi: 10.1097/00004356-200209000-00005.
Quality of life has been used as a synonym for a subject-centred or individually appraised perspective on health. Despite the increase in quality of life research in adults, quality of life in children is relatively neglected. While generic measures begin to emerge now, methods to assess the quality of life of children with chronic conditions are still in development. The design of such an assessment tool for different age groups and different levels of disabilities is the objective of a European-Union-funded study: the DISABKIDS project. In addition, it addresses the psychosocial determinants of quality of life in children with disabilities. A major aim of the project is to develop and test instruments for children and adolescents with disabilities (as well as for their families) in seven countries, to assess the impact of the chronic health conditions on quality of life and to provide a tool for systematic monitoring of the quality of care given to children with disabilities. Assessment and monitoring will allow identification of unmet health care needs and, it is hoped, ultimately, the fostering of the development of effective intervention strategies.
生活质量已被用作以主体为中心或从个体角度对健康进行评估的代名词。尽管针对成年人的生活质量研究有所增加，但儿童的生活质量相对受到忽视。虽然通用测量方法现在开始出现，但评估慢性病患儿生活质量的方法仍在发展中。为不同年龄组和不同残疾程度设计这样一种评估工具，是欧盟资助的一项研究——残疾儿童项目（DISABKIDS project）的目标。此外，该项目还探讨了残疾儿童生活质量的心理社会决定因素。该项目的一个主要目标是为七个国家的残疾儿童和青少年（以及他们的家庭）开发和测试工具，评估慢性健康状况对生活质量的影响，并提供一种工具，用于系统监测为残疾儿童提供的护理质量。评估和监测将有助于识别未满足的医疗需求，并有望最终促进有效干预策略的发展。
