Fischer J S, LaRocca N G, Miller D M, Ritvo P G, Andrews H, Paty D
Mellen Center for MS Treatment and Research (U-10), Cleveland Clinic Foundation, 9500 Euclid Avenue, Cleveland, Ohio 44195-5244, USA.
Mult Scler. 1999 Aug;5(4):251-9. doi: 10.1177/135245859900500410.
Multiple sclerosis (MS) and its treatment have broad-ranging effects on quality of life. This article reviews recent efforts to assess the impact of MS on activities of daily living (ADLs) and health-related quality of life (HRQL), and describes the development of the Multiple Sclerosis Quality of Life Inventory (MSQLI). The MSQLI is a modular MS-specific HRQL instrument consisting of a widely-used generic measure, the Health Status Questionnaire (SF-36), supplemented by nine symptom-specific measures (covering fatigue, pain, bladder function, bowel function, emotional status, perceived cognitive function, visual function, sexual satisfaction, and social relationships). Content validation consisted of evaluating its adherence to a conceptual model of the impact of MS, and review by MS specialists (neurologists and allied health professionals), HRQL experts, patients, and caregivers. The reliability and construct validity of the MSQLI were rigorously evaluated in a field test with 300 North American patients (198 female, 102 male) with definite MS (Poser criteria) and a broad range of physical impairment (EDSS=0. 0-8.5). This article concludes by comparing the MSQLI with two other MS-specific HRQL measures (MS Quality of Life-54 (QOL-54) and Functional Assessment of Multiple Sclerosis (FAMS)) and discussing key issues to consider in selecting an HRQL instrument for a collaborative database.
多发性硬化症（MS）及其治疗对生活质量有广泛影响。本文回顾了近期评估MS对日常生活活动（ADL）及健康相关生活质量（HRQL）影响的研究，并描述了多发性硬化症生活质量量表（MSQLI）的开发过程。MSQLI是一种针对MS的模块化HRQL工具，由广泛使用的通用测量工具健康状况问卷（SF - 36）以及九项特定症状测量工具（涵盖疲劳、疼痛、膀胱功能、肠道功能、情绪状态、感知认知功能、视觉功能、性满意度和社会关系）组成。内容效度评估包括评价其是否符合MS影响的概念模型，以及由MS专家（神经科医生和相关健康专业人员）、HRQL专家、患者和护理人员进行审查。MSQLI的信度和结构效度在一项对300名北美确诊MS患者（198名女性，102名男性）（符合波塞尔标准）且身体损伤程度范围广泛（扩展残疾状态量表评分=0.0 - 8.5）的现场测试中进行了严格评估。本文最后将MSQLI与另外两项针对MS的HRQL测量工具（MS生活质量量表 - 54（QOL - 54）和多发性硬化症功能评估量表（FAMS））进行了比较，并讨论了为合作数据库选择HRQL工具时需要考虑的关键问题。
