德国原发性进展性多发性硬化症(PPMS)患者在接受奥克立珠单抗治疗前的最佳支持治疗:RETRO PPMS 研究的最终结果。

IF 2.6 Q2 CLINICAL NEUROLOGY
Journal of Central Nervous System Disease Pub Date : 2024-10-23 eCollection Date: 2024-01-01 DOI:10.1177/11795735241296001
Herbert Schreiber, Iris-Katharina Penner, Tanja Maier, Stefanie Hieke-Schulz, Jost Leemhuis, Tjalf Ziemssen
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引用次数: 0

摘要

背景:最佳支持治疗(BSC)措施是原发性进行性多发性硬化症(PPMS)治疗的重要组成部分:RETRO PPMS(ML39631)是第一项系统分析德国PPMS患者治疗历程和最佳支持治疗标准的研究:这项多中心、非干预性研究对患者病历进行了回顾性分析。方法:对患者病历进行回顾性分析:数据记录至首次输注奥克立珠单抗(2018 年 7 月至 2021 年 10 月)。从 PPMS 诊断前 12 个月至研究开始前,对病史、疾病状态、疾病活动性和治疗进行评估。对过去27个月的急性干预、BSC参数和康复措施进行了评估:核心分析人群(N = 462)的平均年龄(范围)为 57.4(27-85)岁,平均病程为 13.7(0.3-55.2)年。最常报告的症状是肌肉痉挛、膀胱功能紊乱、共济失调、步态障碍和疲劳。最常用的治疗方法是物理/职业疗法(66.5% 的患者);47.2% 的患者接受了标示外皮质类固醇激素/改变病情疗法的治疗。针对许多症状的 BSC 措施非常罕见,尤其是疲劳和认知障碍:这项分析揭示了许多使人衰弱的 PPMS 症状存在严重的 BSC 缺陷。对于创新的多学科护理理念以及神经系统一级和二级护理的改进,仍有大量需求未得到满足。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
Best supportive care for patients with primary progressive multiple sclerosis (PPMS) in Germany prior to ocrelizumab treatment: Final results from the RETRO PPMS study.

Background: Best supportive care (BSC) measures are an essential component for the management of primary progressive multiple sclerosis (PPMS).

Objectives: RETRO PPMS (ML39631) is the first study to systematically analyze the therapeutic journey and standard of BSC of patients with PPMS in Germany.

Design: This multicenter, non-interventional study retrospectively analyzed patient charts. Methods: Data were recorded up until the first infusion of ocrelizumab (July 2018 to October 2021). Medical history, disease status, disease activity and treatments were assessed from 12 months before PPMS diagnosis until study start. Acute interventions, BSC parameters and rehabilitation measures from the past 27 months were assessed.

Results: The core analysis population (N = 462) had a mean age (range) of 57.4 (27-85) years and mean disease duration of 13.7 (0.3-55.2) years. The most frequently reported symptoms were muscle spasticity, bladder disorder, ataxia, gait disturbance and fatigue. The most commonly used treatment was physical/occupational therapy (66.5% of patients); 47.2% received off-label treatment with corticosteroids/disease-modifying therapies. BSC measures for many symptoms were strikingly rare - especially for fatigue and cognitive impairment.

Conclusion: This analysis uncovers severe BSC deficits for many debilitating PPMS symptoms. There is still a large unmet need for innovative multidisciplinary care concepts and improvements in neurological primary and secondary care.

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来源期刊
CiteScore
6.90
自引率
0.00%
发文量
39
审稿时长
8 weeks
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