Wells George A, Russell Anthony S, Haraoui Boulos, Bissonnette Robert, Ware Carl F
Cardiovascular Research Methods Centre, University of Ottawa Heart Institute, 40 Ruskin Street, Ottawa, Ontario, Canada.
J Rheumatol Suppl. 2011 Nov;88:2-6. doi: 10.3899/jrheum.110906.
Health-related quality of life (HRQOL) is an important measure of a patient's perception of his/her illness. Over the past 3 decades, numerous instruments have been developed to measure HRQOL in various patient populations, with 2 basic approaches: generic and disease-specific. While generic measures have broad application across different types and severity of diseases, disease-specific measures are designed to assess particular diseases or patient populations. All HRQOL instruments, however, must be valid and have high reliability and responsiveness. Validity ensures that the instrument measures what it is supposed to measure. Reliable instruments are able to reproducibly differentiate between subjects. Responsive evaluative measures are able to detect important changes in HRQOL during a period of time, even if those changes are small. HRQOL measures should also be interpretable, meaning that the differences in scores that correspond to small, moderate, and large HRQOL changes are easily identifiable. This article describes the steps in the development of HRQOL instruments from the conceptual framework to creation and testing. Several examples of generic and disease-specific instruments commonly used to evaluate HRQOL in patients with immune-mediated inflammatory diseases (IMID) are provided.
健康相关生活质量（HRQOL）是衡量患者对自身疾病认知的一项重要指标。在过去三十年中，已经开发出众多工具来测量不同患者群体的HRQOL，主要有两种基本方法：通用型和疾病特异性型。通用型测量方法广泛应用于不同类型和严重程度的疾病，而疾病特异性测量方法则旨在评估特定疾病或患者群体。然而，所有HRQOL工具都必须有效，且具有高可靠性和反应性。有效性确保工具测量的是其应测量的内容。可靠的工具能够在不同受试者之间进行可重复的区分。反应性评估工具能够检测出一段时间内HRQOL的重要变化，即使这些变化很小。HRQOL测量结果还应具有可解释性，即对应于HRQOL小、中、大变化的分数差异应易于识别。本文描述了从概念框架到创建和测试HRQOL工具的开发步骤。还提供了一些常用于评估免疫介导炎症性疾病（IMID）患者HRQOL的通用型和疾病特异性工具的示例。
