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脑健康:时间在多发性硬化症中至关重要。

Brain health: time matters in multiple sclerosis.

作者信息

Giovannoni Gavin, Butzkueven Helmut, Dhib-Jalbut Suhayl, Hobart Jeremy, Kobelt Gisela, Pepper George, Sormani Maria Pia, Thalheim Christoph, Traboulsee Anthony, Vollmer Timothy

机构信息

Queen Mary University London, Blizard Institute, Barts and The London School of Medicine and Dentistry, London, UK.

Melbourne Brain Centre, Royal Melbourne Hospital, University of Melbourne, Parkville, Australia.

出版信息

Mult Scler Relat Disord. 2016 Sep;9 Suppl 1:S5-S48. doi: 10.1016/j.msard.2016.07.003. Epub 2016 Jul 7.

DOI:10.1016/j.msard.2016.07.003
PMID:27640924
Abstract

INTRODUCTION

We present international consensus recommendations for improving diagnosis, management and treatment access in multiple sclerosis (MS). Our vision is that these will be used widely among those committed to creating a better future for people with MS and their families.

METHODS

Structured discussions and literature searches conducted in 2015 examined the personal and economic impact of MS, current practice in diagnosis, treatment and management, definitions of disease activity and barriers to accessing disease-modifying therapies (DMTs).

RESULTS

Delays often occur before a person with symptoms suggestive of MS sees a neurologist. Campaigns to raise awareness of MS are needed, as are initiatives to improve access to MS healthcare professionals and services. We recommend a clear treatment goal: to maximize neurological reserve, cognitive function and physical function by reducing disease activity. Treatment should start early, with DMT and lifestyle measures. All parameters that predict relapses and disability progression should be included in the definition of disease activity and monitored regularly when practical. On suboptimal control of disease activity, switching to a DMT with a different mechanism of action should be considered. A shared decision-making process that embodies dialogue and considers all appropriate DMTs should be implemented. Monitoring data should be recorded formally in registries to generate real-world evidence. In many jurisdictions, access to DMTs is limited. To improve treatment access the relevant bodies should consider all costs to all parties when conducting economic evaluations and encourage the continuing investigation, development and use of cost-effective therapeutic strategies and alternative financing models.

CONCLUSIONS

The consensus findings of an international author group recommend a therapeutic strategy based on proactive monitoring and shared decision-making in MS. Early diagnosis and improved treatment access are also key components.

摘要

引言

我们提出了关于改善多发性硬化症(MS)诊断、管理及治疗可及性的国际共识建议。我们的愿景是,这些建议将在致力于为MS患者及其家庭创造更美好未来的人群中得到广泛应用。

方法

2015年开展的结构化讨论和文献检索,考察了MS对个人和经济的影响、当前诊断、治疗及管理的实践情况、疾病活动的定义以及获取疾病修正治疗(DMT)的障碍。

结果

出现MS症状的患者往往在很长时间后才会去看神经科医生。需要开展提高对MS认识的宣传活动,同时也需要采取举措改善获取MS医疗专业人员和服务的机会。我们建议设定明确的治疗目标:通过降低疾病活动来最大化神经储备、认知功能和身体功能。治疗应尽早开始,采用DMT和生活方式干预措施。预测复发和残疾进展的所有参数都应纳入疾病活动的定义中,并在实际可行时进行定期监测。如果疾病活动控制不佳,应考虑换用作用机制不同的DMT。应实施一个体现对话并考虑所有适当DMT的共同决策过程。监测数据应正式记录在登记处,以生成真实世界证据。在许多司法管辖区,获取DMT的机会有限。为改善治疗可及性,相关机构在进行经济评估时应考虑各方的所有成本,并鼓励持续研究、开发和使用具有成本效益的治疗策略及替代融资模式。

结论

一个国际作者小组的共识结果推荐了一种基于MS主动监测和共同决策的治疗策略。早期诊断和改善治疗可及性也是关键组成部分。

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