College of Medicine, Swansea University, UK.
Mult Scler. 2012 Dec;18(12):1718-20. doi: 10.1177/1352458512457847. Epub 2012 Sep 11.
In order to fully understand and explore the effectiveness of any intervention for the management of multiple sclerosis (MS), it is important to have robust, valid, reliable, and universally applied measures. The recent article, 'Disability outcome measures in multiple sclerosis clinical trials' by Cohen, Reingold, Polman and Wolinsky (2012), explores this issue in regards to the effective measurement of MS-related disability, and the utilisation of patient-reported outcome measures, whilst highlighting the need for collaboration between the academic and clinical communities. Although it is important to examine disability measures, it is also equally important to recognise that physical function is only one aspect of a person's experience; for example, quality of life and psychological well-being are also important aspects to assess. The application of e-health technologies and patient registers could be a useful method of gaining additional information, using patient-reported outcomes. This commentary explores these issues in relation to points raised by the Cohen et al. paper.
为了充分了解和探索多发性硬化症(MS)管理中任何干预措施的效果,拥有强大、有效、可靠和普遍适用的措施非常重要。最近,Cohen、Reingold、Polman 和 Wolinsky(2012)发表的文章“多发性硬化症临床试验中的残疾结局测量”探讨了这一问题,涉及到有效测量与 MS 相关的残疾以及患者报告的结果测量的应用,同时强调了学术界和临床界之间合作的必要性。虽然检查残疾测量很重要,但同样重要的是要认识到身体功能只是一个人的体验的一个方面;例如,生活质量和心理健康也是需要评估的重要方面。电子健康技术和患者登记的应用可能是使用患者报告结果获得额外信息的有用方法。本评论探讨了这些问题,涉及到 Cohen 等人的论文中提出的观点。