Borgaonkar M R, Irvine E J
Division of Gastroenterology, Department of Medicine McMaster University, Hamilton, Ontario, Canada.
Gut. 2000 Sep;47(3):444-54. doi: 10.1136/gut.47.3.444.
Modern medicine has had a considerable impact on mortality rates for serious illness. Many chronic diseases which have previously been associated with an increased mortality now have survival rates approaching those of the background population. However, chronic diseases such as cancer, chronic pain syndromes, and chronic inflammatory conditions impose a considerable burden on families, the health care system, and society. Health related quality of life (HRQOL) is a concept that has developed from the need to estimate the impact of such chronic diseases. HRQOL measurement is a conceptual framework which attempts to predict daily function and well being based on subjective attitudes and experiences of physical, social, and emotional health. It has been evaluated predominantly from the patient's viewpoint as proxy respondents appear to underestimate the full effect of chronic illness on functional status. Measuring HRQOL in clinical research is most frequently undertaken using multi-item questionnaires to estimate daily function. Factors which affect HRQOL can be broadly classed as disease related and disease independent. The use of different assessment techniques permits comparisons between and within disorders. Generic and disease specific instruments used together enhance the ability to direct treatment for individuals and patient populations. Psychometrically sound questionnaires must be used. However, the type of instrument and research methods adopted depend on the question of interest. We have attempted to catalogue and critically assess the disease specific instruments used in the assessment of chronic gastrointestinal disease.
现代医学对严重疾病的死亡率产生了重大影响。许多以前与死亡率上升相关的慢性疾病，如今的生存率已接近普通人群。然而，诸如癌症、慢性疼痛综合征和慢性炎症性疾病等慢性疾病给家庭、医疗保健系统和社会带来了相当大的负担。健康相关生活质量（HRQOL）这一概念是因评估此类慢性疾病的影响的需求而发展起来的。HRQOL测量是一个概念框架，它试图根据对身体、社会和情感健康的主观态度和体验来预测日常功能和幸福感。由于代理受访者似乎低估了慢性病对功能状态的全面影响，因此主要从患者的角度对其进行评估。在临床研究中，测量HRQOL最常使用多项目问卷来估计日常功能。影响HRQOL的因素大致可分为与疾病相关的和与疾病无关的。使用不同的评估技术可以对不同疾病之间以及同一疾病内部进行比较。通用型和疾病特异性工具一起使用可增强针对个体和患者群体指导治疗的能力。必须使用心理测量学上可靠的问卷。然而，所采用的工具类型和研究方法取决于所关注的问题。我们试图对用于评估慢性胃肠疾病的疾病特异性工具进行编目和批判性评估。
