Nortvedt M W, Riise T
Department of Public Health and Primary Health Care, University of Bergen, Ulriksdal 8C, N-5009 Bergen, Norway.
Mult Scler. 2003 Feb;9(1):63-72. doi: 10.1191/1352458503ms871oa.
Quality of life research contributes knowledge essential to the health and healthcare of multiple sclerosis (MS) patients. This article reviews 83 MS studies in English that have presented data on quality of life. The studies may be classified into three categories, according to the application and the main focus: 1) evaluating the development and validity of quality of life questionnaires and clinical scales (n = 27); 2) evaluating factors that might influence the quality of life or comparing the quality of life among various groups (n = 37); and 3) using quality of life questionnaires as outcome measures in medical trials and other interventions (n = 19). The studies have shown that quality of life questionnaires more broadly measure the impact of MS than do the most frequently used measures of disease activity and effects. Using quality of life measures provides additional information in evaluating the effects of treatment and in studying the development of the disease. Such information is crucial in planning interventions for MS patients. A challenge in this field is to improve the study designs, including reaching some agreement on how to measure the quality of life.
生活质量研究为多发性硬化症（MS）患者的健康和医疗保健贡献了至关重要的知识。本文回顾了83项以英文发表的关于MS患者生活质量数据的研究。根据应用和主要关注点，这些研究可分为三类：1）评估生活质量问卷和临床量表的开发与效度（n = 27）；2）评估可能影响生活质量的因素或比较不同群体的生活质量（n = 37）；3）在医学试验和其他干预措施中使用生活质量问卷作为结果指标（n = 19）。研究表明，与最常用的疾病活动和影响测量方法相比，生活质量问卷能更广泛地衡量MS的影响。使用生活质量测量方法在评估治疗效果和研究疾病发展方面提供了额外信息。这些信息对于为MS患者制定干预措施至关重要。该领域的一个挑战是改进研究设计，包括就如何测量生活质量达成一些共识。
