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多发性硬化症患者报告的结果:一个前性的注册表队列研究

Annalaura Lerede¹, Jeff Rodgers², Rod M Middleton²

¹Department of Brain Sciences, Imperial College London, London W120BZ, UK.

Brain communications

|August 22, 2023

概括

患者报告的结果有效地追踪多发性硬化症 (MS) 的身体残疾随着时间的推移和各个亚型. 这些测量可以在临床诊断前几年预测向渐进性多发性硬化症的过渡,揭示潜在的多发性硬化症前.

科学领域:

神经学神经学
流行病学流行病学
医疗信息学医疗信息学

背景情况:

多发性硬化症 (MS) 登记处在长期影响评估方面面临挑战.
在线患者报告结果 (PROs) 提供可扩展,具有成本效益的数据收集,但其敏感性尚不清楚.
利用注册表数据需要了解PROs相对于临床措施的有效性.

研究的目的:

为了验证患者报告的结果 (PROs) 用于测量多发性硬化症 (MS) 的身体残疾.
评估PRO对MS亚型和疾病持续时间的敏感性.
使用PRO数据探索MS亚型进展的洞察力.

主要方法:

在11年内对15976名多发性硬化患者进行了回顾性和前性队列研究.
使用的多发性硬化症影响量表 (MSIS-29) 运动部件和多发性硬化症行走量表 (MSWS-12) PROs.
在稀疏的注册表数据 (91,351个MSIS-29,68,092个MSWS-12记录) 上使用蒙特卡洛排列分析来评估有效性.

主要成果:

试验结果显示了MS亚型和持续时间的显著影响 (P < 0.0001).
在大多数亚型中,PRO随时间的推移而恶化,除了良性MS外.
在亚型之间,PROs有显著的差异,在临床检测前几年预测未来向渐进形式的过渡 (P < 0.0001).

结论:

患者报告的结果是有效,敏感和具有成本效益的工具,用于长期评估MS的物理影响.
结果显示,MS的各个亚型和持续时间都有明显的恶化模式.
先进的身体残疾可能会先于进展性MS的临床诊断,暗示出产阶段.

关键词:

多发性硬化症多发性硬化症在线注册登记册在线注册登记册患者报告的结果.

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