Mellen Center for Multiple Sclerosis Treatment and Research, Cleveland Clinic, U-10, 9500 Euclid Avenue, Cleveland, OH 44195, USA.
Curr Neurol Neurosci Rep. 2010 Sep;10(5):397-406. doi: 10.1007/s11910-010-0132-4.
Multiple sclerosis (MS) is a complex demyelinating disease with a relatively unpredictable course. It is well established that MS has a significant impact on health-related quality of life (HRQL) for individuals at all stages of the disease. It is argued that clinicians offer treatment to their patients for three reasons: 1) to increase longevity, 2) to prevent future morbidity, and 3) to make patients feel better. To assess how well they are accomplishing the third of these goals, clinicians have come to depend on the direct measurement of patients' HRQL. We review the many physical and emotional symptoms and other consequences of MS that negatively influence HRQL, how HRQL is measured, the unique information these measures provide compared with clinical parameters, the benefit of treatment interventions, and how to include HRQL assessment and data from other sources in clinical encounters and suggest measures to consider for clinical use.
多发性硬化症（MS）是一种复杂的脱髓鞘疾病，其病程相对不可预测。已经证实，多发性硬化症在疾病的各个阶段都会对个体的健康相关生活质量（HRQL）产生重大影响。有人认为，临床医生为患者提供治疗有三个原因：1）延长寿命，2）预防未来的发病，3）使患者感觉更好。为了评估他们在实现第三个目标方面的表现如何，临床医生已经开始依赖于直接测量患者的 HRQL。我们回顾了许多影响 HRQL 的多发性硬化症的身体和情绪症状及其他后果，介绍了 HRQL 的测量方法，这些测量方法与临床参数相比提供的独特信息，治疗干预的益处，以及如何将 HRQL 评估和其他来源的数据纳入临床接触，并提出了一些用于临床使用的措施建议。
