肌萎缩性侧索硬化症患者共享预后信息——系统评估患者对神经丝轻链的感知和ALS功能评定量表。

Q2 Medicine
Lukas Maximilian Möhwald, André Maier, Torsten Grehl, Ute Weyen, Patrick Weydt, René Günther, Paul Lingor, Bettina Göricke, Susanne Petri, Julian Grosskreutz, Matthias Boentert, Isabell Cordts, Jochen H Weishaupt, Johannes Dorst, Christoph Münch, Thomas Meyer, Petra Baum
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引用次数: 0

摘要

背景:在肌萎缩性侧索硬化症(ALS)中,神经丝轻链(NfL)被引入作为预后生物标志物。最近,NfL值可以在患者的ALS应用程序上共享。此外,ALS功能评定量表(ALSFRS-R)是一种已建立的患者报告的疾病进展评估。该量表可在门诊就诊或远程获取。然而,很少有关于患者对NfL和ALSFRS-R预后信息的感知以及这些数据的远程共享的系统数据。方法:在一项多中心研究中,采用研究者设计的调查和建立的问卷,评估149名ALS患者对NfL和ALSFRS-R共享信息的感知。使用净启动值(NPS)评估NfL和ALSFRS-R对其他患者的推荐。在两种不同的环境下调查共享信息负担:(1)门诊就诊时收到NfL和/或ALSFRS-R结果时的临床信息;(2)通过ALS应用程序获得NfL值和ALSFRS-R自评的远程信息。一般焦虑通过恐惧进展问卷-短表(op - q - sf)测量。结果:NfL和ALSFRS-R的信息分别(n = 149)被认为与患者自身相关(75.2%和77.2%),与研究相关(98%和96%)。NPS对NfL(+ 21)和ALSFRS-R(+ 26)的推荐率较高。只有少数患者认为关于NfL的共享信息是负担,临床环境(n = 1,4.2%)的负担低于远程环境(n = 8,12%;p = 0.015)。ALSFRS-R的远程数字评估得到了很好的接受,据报道9.8% (n = 9)的参与者有负担。FoP-Q-SF显示40%的受访者(n = 60)对进步感到恐惧。结论:本研究从患者的角度强调了NfL和ALSFRS-R信息的相关性。此外,患者证明了这些数据与ALS研究的相关性。即使在使用ALS应用程序的远程设置中,共享有关NfL或ALSFRS-R的信息也很少被认为是负担。这些发现为进一步开发以患者为中心的方法来共享ALS预后信息铺平了道路。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
Shared prognostic information in amyotrophic lateral sclerosis - systematic assessment of the patients' perception of neurofilament light chain and the ALS functional rating scale.

Background: In amyotrophic lateral sclerosis (ALS), neurofilament light chain (NfL) was introduced as a prognostic biomarker. More recently, NfL values can be shared on the patient's ALS app. Also, the ALS functional rating scale (ALSFRS-R) is an established patient-reported assessment of disease progression. The scale can be obtained during clinic visits or remotely. However, few systematic data are available on the patients' perception of prognostic information about NfL and ALSFRS-R and the remote sharing of these data.

Methods: In a multicenter study, 149 ALS patients were assessed for their perception of shared information about NfL and ALSFRS-R using an investigator-designed survey and established questionnaires. The recommendation of NfL and ALSFRS-R to fellow patients was assessed using the Net Promoter Score (NPS). Burden by shared information was investigated in two distinct settings: (1) clinic information when receiving results on NfL and/or ALSFRS-R during clinic visits and (2) remote information about NfL values and self-rating of the ALSFRS-R via the ALS app. General anxiety was measured by the Fear of Progression Questionnaire - Short Form (FoP-Q-SF).

Results: Information about NfL and ALSFRS-R, respectively (n = 149), were regarded as relevant for patients themselves (75.2% and 77.2%) and for research (98% and 96%). The NPS showed a high recommendation rate for NfL (+ 21) and ALSFRS-R (+ 26). Only a minority of patients perceived shared information about NfL as burdensome, with a lower burden in the clinic setting (n = 1, 4.2%) than in the remote setting (n = 8, 12%; p = 0.015). Remote digital assessment of the ALSFRS-R was well received, with a reported burden in 9.8% (n = 9) of the participants. The FoP-Q-SF revealed fear of progression in 40% of the respondents (n = 60).

Conclusions: This study underscored the relevance of information about NfL and ALSFRS-R from the patient's perspective. Furthermore, patients proved to appreciate the relevance of this data for ALS research. Sharing information about NfL or ALSFRS-R was rarely perceived as burdensome even in a remote setting using the ALS app. These findings pave the way for further development of the patient-centered approach to sharing prognostic information in ALS.

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