Szecket N, Medin G, Furlong W J, Feeny D H, Barr R D, Depauw S
Health Sciences Center, McMaster University, Hamilton, Canada.
Int J Cancer Suppl. 1999;12:119-24.
Quality-of-life assessment is being used increasingly in clinical research. This is true particularly in the case of survivors of cancer in childhood, where improving survival rates have raised concern regarding the long-term effects of medical cure. Health-status assessment and quality-of-life instruments have been developed for the most part in the English language, thus necessitating their translation and cultural adaptation for use in non-English-speaking countries. Our purpose was to develop a set of Spanish-language questionnaires for application with a population of children with cancer in a tertiary-care center in Buenos Aires, Argentina. The Health Utilities Index (HUI), a conceptual framework for assessing health status, was chosen for this study. Three distinct questionnaires, based on the HUI, were used: a self-completed one for health professionals and teachers (15Q) to report assessments of children and 2 interviewer-administered ones, for child survivors (42Q) to report assessments about their own health status and parents (45Q) to report assessments about their children's health status. The original translations and reviews were accomplished with direct oversight by members of the HUI Group, to ensure conceptual equivalence. The instruments were then tested in Buenos Aires by application to staff of the hematology-oncology service, childhood cancer patients and the parents of childhood cancer patients. Several modifications were made based on these tests. We concluded that the translation and cultural adaptation of these instruments was adequate for use with the groups tested in a pilot survey of survivors of childhood cancer in Argentina.
生活质量评估在临床研究中的应用越来越广泛。这在儿童癌症幸存者的情况中尤为如此,因为存活率的提高引发了人们对医疗治愈长期影响的关注。健康状况评估和生活质量工具大多是用英语开发的,因此有必要对其进行翻译和文化调适,以便在非英语国家使用。我们的目的是开发一套西班牙语问卷,用于阿根廷布宜诺斯艾利斯一家三级医疗中心的儿童癌症患者群体。本研究选用了健康效用指数(HUI),这是一个评估健康状况的概念框架。基于HUI使用了三种不同的问卷:一份供卫生专业人员和教师自行填写的问卷(15Q),用于报告对儿童的评估;两份由访谈员实施的问卷,一份供儿童幸存者填写(42Q),用于报告他们自己的健康状况评估,另一份供家长填写(45Q),用于报告他们对孩子健康状况的评估。最初的翻译和审核在HUI小组成员的直接监督下完成,以确保概念对等。然后,这些工具在布宜诺斯艾利斯对血液肿瘤服务部门的工作人员、儿童癌症患者及其家长进行了测试。根据这些测试进行了一些修改。我们得出结论,这些工具的翻译和文化调适足以在阿根廷儿童癌症幸存者的试点调查中用于测试群体。