Measurement of quality of life in cystic fibrosis.
Measurement of quality of life in cystic fibrosis.
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DOI：
10.1097/00063198-199811000-00003
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发表时间：
1998-11-01
影响因子：
3.3
通讯作者：
Quittner, A L
中科院分区：
文献类型：
--
作者：
Quittner, A L
在过去的20年中，在定义和测量与健康相关的生活质量（QOL）方面取得了相当大的进展，人们越来越认识到这些措施提供了有关慢性疾病及其治疗影响的独特信息。对于囊性纤维化（CF）患者，健康相关的QOL测量使研究人员和临床医生能够确定临床干预措施对日常生活多个方面（心理、情感、社交）的影响，而这些方面并未反映在典型的健康指标中，例如，肺功能评分。已经开发了三种类型的健康相关QOL测量：1）效用测量，2）健康概况，和3）疾病特异性测量。每种类型的健康相关的生活质量的措施的目的进行了描述，并审查其应用于CF患者。虽然重要的描述性信息已经从实用措施，如幸福质量量表，和健康概况，如诺丁汉健康概况，这些工具都有严重的局限性。疾病特异性指标，类似于为儿童和成人哮喘患者制定的指标，似乎最有希望促进我们对CF对日常生活影响的理解，并评估新的临床干预措施的有效性。囊性纤维化问卷是唯一已发表的针对儿童、青少年和成人囊性纤维化健康相关QOL的疾病特异性指标。它的心理测量特性进行了简要的回顾，并提出了未来的研究方向。
Considerable progress has been made over the past 2 decades in defining and measuring health-related quality of life (QOL), and there is a growing recognition that these measures provide unique information about the impact of a chronic illness and its treatment. For patients with cystic fibrosis (CF), health-related QOL measures enable researchers and clinicians to determine the effects of clinical interventions on several aspects of daily living (psychological, emotional, social) that are not reflected in typical health indicators, eg, pulmonary functioning scores. Three types of health-related QOL measures have been developed: 1) utility measures, 2) health profiles, and 3) disease-specific measures. The purpose of each type of health-related QOL measure is described, and its application to patients with CF is reviewed. Although important descriptive information has been obtained from utility measures, eg, the Quality of Well-Being Scale, and health profiles, eg, the Nottingham Health Profile, both of these instruments have serious limitations. Disease-specific measures, similar to those developed for children and adults with asthma, seem to hold the greatest promise for advancing our understanding of the impact of CF on daily life and for evaluating the effectiveness of new clinical interventions. The Cystic Fibrosis Questionnaire is the only published disease-specific measure of health-related QOL for children, adolescents, and adults with CF. Its psychometric properties are briefly reviewed, and directions for future research are suggested.