Development and pilot-testing of a health-related quality of life chronic generic module for children and adolescents with chronic health conditions: A European perspective
Development and pilot-testing of a health-related quality of life chronic generic module for children and adolescents with chronic health conditions: A European perspective
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DOI：
10.1007/s11136-004-2575-z
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发表时间：
2005-05-01
影响因子：
3.5
通讯作者：
Bullinger, M
中科院分区：
文献类型：
--
作者：
Petersen, C;Schmidt, S;Bullinger, M
患有慢性健康状况的儿童和青少年的健康相关生活质量（HRQOL）评估越来越被认为是一个相关主题。欧盟资助的DISABKIDS项目的目的是开发、测试和实施欧洲工具，用于评估残疾儿童和青少年及其家庭的HRQOL。本文介绍了慢性通用HRQOL措施的发展和试点测试。通过文献检索、专家咨询和与儿童/青少年及其家庭的重点小组，制定了文书项目，并将其翻译成相应的语言。对360名儿童和青少年进行了试点测试。研究纳入了患有不同慢性健康状况（哮喘、癫痫、糖尿病、关节炎、特应性皮炎、脑瘫和囊性纤维化）的儿童和青少年（8 - 12岁、13 - 16岁）及其家人。根据预先定义的心理测量和内容标准对数据进行分析。心理测量学分析导致了一个56项慢性通用HRQOL问卷与6个领域（“药物”，“身体”，“自主”，“社会包容”，“社会排斥”）与可接受的内部一致性。
Health-related quality of life (HRQOL) assessment in children and adolescents with chronic health conditions is increasingly considered as a relevant topic. The aim of the EU-funded DISABKIDS project is to develop, test, and implement European instruments for the assessment of HRQOL of children and adolescents with disabilities and their families. The current paper describes the development and pilot testing of a chronic generic HRQOL measure. Using literature searches, expert consulting and focus groups with children/adolescents and their families, items of the instruments were developed and translated into the respective languages. A pilot test with 360 children and adolescents was conducted. Children and adolescents ( 8 - 12, 13 - 16 years) with different chronic health conditions ( asthma, epilepsy, diabetes, arthritis, atopic dermatitis, cerebral palsy, and cystic fibrosis) as well as their families were included. Data were analysed according to predefined psychometric and content criteria. Psychometric analyses resulted in a 56-item chronic generic HRQOL questionnaire with six domains ('Medication', 'Physical', 'Emotion', 'Independence', 'Social Inclusion', 'Social Exclusion') with acceptable internal consistency.