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创新医疗技术与多发性硬化症的治疗决策过程:一项聚焦小组研究以审视患者观点

Innovative Medical Technology and the Treatment Decision-Making Process in Multiple Sclerosis: A Focus Group Study to Examine Patient Perspectives.

作者信息

Visser L A, De Mul M, Redekop W K

机构信息

Health Technology Assessment, Erasmus School of Health Policy & Management, Erasmus University Rotterdam, Rotterdam, the Netherlands.

Health Services Management & Organization, Erasmus School of Health Policy & Management, Erasmus University Rotterdam, Rotterdam, the Netherlands.

出版信息

Patient Prefer Adherence. 2021 May 7;15:927-937. doi: 10.2147/PPA.S306132. eCollection 2021.

Abstract

BACKGROUND

Disease-modifying therapies are given to people with multiple sclerosis (MS) to reduce disease progression and relapse frequency. Current modes of administration include oral, injectable and infusion therapy and the treatment decision-making process is complex. A novel mode of treatment administration, an implantable device, is currently under development, yet patient attitudes about the device are unknown. The aim of this study was 1) to understand the treatment decision-making process from the patient perspective and 2) to explore the possible acceptance of an implant to treat MS.

METHODS

Focus groups with people with MS were conducted in the Netherlands. Three topics were addressed: the treatment decision-making process, the current treatment landscape, and attitudes about the implantable device. All focus groups were recorded and transcribed and data were analyzed by raw data coding and creating themes. An online survey was conducted in the Netherlands to quantify interest in an implant.

RESULTS

Two focus group sessions were held (n=16 participants) and n=93 persons filled out the survey. The main theme that emerged was the constant uncertainty persons with MS face throughout their disease course and during treatment decisions (when to start, stop, continue or switch treatment). Patients were generally positive towards the implant but felt that efficacy and safety should be guaranteed.

CONCLUSION

People with MS want some form of control over their disease and treatment course. New medical technologies, such as an implant, may enhance the treatment landscape and with caution we postulate that it may be accepted by patients as a new mode of administration, though further research is needed. For medical technologies to be successful, patients should be engaged early on in the design process.

摘要

背景

疾病修饰疗法用于治疗多发性硬化症(MS)患者,以减缓疾病进展并降低复发频率。当前的给药方式包括口服、注射和输液疗法,治疗决策过程复杂。一种新型治疗给药方式,即植入式装置,目前正在研发中,但患者对该装置的态度尚不清楚。本研究的目的是:1)从患者角度了解治疗决策过程;2)探讨植入物治疗MS的可能接受度。

方法

在荷兰对MS患者进行了焦点小组访谈。讨论了三个主题:治疗决策过程、当前治疗情况以及对植入式装置的态度。所有焦点小组访谈均进行了录音和转录,并通过原始数据编码和创建主题对数据进行了分析。在荷兰进行了一项在线调查,以量化对植入物的兴趣。

结果

举行了两次焦点小组会议(n = 16名参与者),n = 93人填写了调查问卷。出现的主要主题是MS患者在整个病程和治疗决策(何时开始、停止、继续或更换治疗)过程中面临的持续不确定性。患者总体上对植入物持积极态度,但认为应确保其有效性和安全性。

结论

MS患者希望对其疾病和治疗过程有某种形式的控制。新的医疗技术,如植入物,可能会改善治疗局面,我们谨慎推测,尽管还需要进一步研究,但它可能会被患者接受为一种新的给药方式。为使医疗技术取得成功,应在设计过程早期就让患者参与进来。

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