Jacoby A
Centre for Health Services Research, University of Newcastle upon Tyne, England.
Pharmacoeconomics. 1996 May;9(5):399-416. doi: 10.2165/00019053-199609050-00004.
The importance of quality-of-life (QOL) assessments in providing quantified information about the impact of chronic illness and its treatment is now generally accepted. For epilepsy, QOL assessment is a relatively recent development, but it is increasingly included within clinical trial protocols. Clinical trials in epilepsy that have included a comprehensive QOL assessment, although still relatively few in number, have examined the effectiveness both of broad management policies and of individual drug therapies. There are a number of important conceptual, methodological and practical issues behind the measurement of quality of life as an outcome of care in epilepsy that are being addressed through current efforts to develop standardised QOL instruments. In trying to assess quality of life in epilepsy, as in any other condition, it is important to satisfy the universal requirements of a scientific instrument-that it be valid, reliable, sensitive in change and practical. To date, the main 'formal' approaches to QOL assessment in epilepsy have involved the development of a novel QOL measure from first principles, customising of a previously developed generic measure, identification of a battery of generic and disease-specific scales addressing specific QOL domains, and adoption of an individual patient-generated approach. These various efforts have produced a battery of potentially valuable tools and approaches. Although QOL assessment is now mainly on the epilepsy research agenda, some important challenges remain to be met. These include the development of comprehensive, age-related measures for children with epilepsy, further investigation of the psychometric properties of the available measures for adults, issues of cross-cultural application and use with proxy informants, and the development of utility-based measures.
生活质量（QOL）评估在提供有关慢性病及其治疗影响的量化信息方面的重要性现已得到普遍认可。对于癫痫而言，QOL评估是一个相对较新的发展领域，但它越来越多地被纳入临床试验方案中。癫痫的临床试验虽然数量仍然相对较少，但已包括全面QOL评估，这些试验考察了广泛管理政策和个别药物治疗的有效性。作为癫痫护理结果的生活质量测量背后存在许多重要的概念、方法和实际问题，目前正在通过努力开发标准化QOL工具来解决这些问题。在试图评估癫痫患者的生活质量时，与评估任何其他疾病的生活质量一样，重要的是要满足科学工具的普遍要求——即它要有效、可靠、对变化敏感且实用。迄今为止，癫痫QOL评估的主要“正式”方法包括从基本原则出发开发一种新的QOL测量方法、对先前开发的通用测量方法进行定制、确定一系列针对特定QOL领域的通用和疾病特异性量表，以及采用患者个体生成的方法。这些不同的努力产生了一系列潜在有价值的工具和方法。虽然QOL评估现在主要在癫痫研究议程上，但仍有一些重要挑战有待解决。这些挑战包括为癫痫儿童开发全面的、与年龄相关的测量方法、进一步研究现有成人测量方法的心理测量特性、跨文化应用和与代理信息提供者一起使用的问题，以及基于效用的测量方法的开发。
