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决策辅助工具并非改善晚期帕金森病共同决策的速效方法:一项混合方法可行性研究的结果

A decision aid is not the quick fix for improving shared decision-making in advanced Parkinson's disease: results of a mixed methods feasibility study.

作者信息

Nijhuis Frouke A P, Schippers Bas, Bloem Bastiaan R, Post Bart, Meinders Marjan J

机构信息

Department of Neurology, Canisius Wilhelmina Hospital, Nijmegen, The Netherlands.

Department of Neurology, Center of Expertise for Parkinson and Movement Disorders, Research Institute for Medical Innovation, Radboud University Medical Center, Nijmegen, The Netherlands.

出版信息

J Neurol. 2025 Mar 13;272(4):269. doi: 10.1007/s00415-025-12972-x.

DOI:10.1007/s00415-025-12972-x
PMID:40080221
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC11906552/
Abstract

BACKGROUND

Choosing a device-assisted treatment for persons with Parkinson's disease (PwPD) is a complex decision. We developed a shared decision-making (SDM) intervention to facilitate this decision. In this study, we evaluate the feasibility of this intervention from the patients' perspective.

METHODS

We performed a multi-center, mixed-methods feasibility study with an uncontrolled pre-post-intervention design. Five neurologists and seven Parkinson nurse specialists from five Dutch hospitals participated. We aimed to enroll 20 PwPD in the usual-care group receiving decision support as usual, and 20 PwPD receiving the SDM intervention. The intervention consisted of a patient decision aid and a training for professionals. We evaluated feasibility by measuring acceptability, level of implementation, efficacy and the study procedures. For data collection, we used questionnaires, interviews, cognitive testing, consultation recordings, fieldnotes, and usage of the patient decision aid.

RESULTS

We included 19 PwPD in the usual-care group and 13 in the intervention group. Acceptability was good and implementation levels at the patient level were adequate: 92% of the participants used the patient decision aid, of which 77% the website and 69% the value clarification tool. The intervention improved PwPD's knowledge on treatment options, however, it did not improve SDM. The SDM intervention was not used as intended and the initial treatment preference of either the PwPD or the professional directed the information exchange.

CONCLUSIONS

Inclusion of PwPD for the study was limited. Acceptability of the SDM intervention was good, however, the patient decision aid should be used in collaboration between physicians and patients to enhance SDM.

TRIAL REGISTRATION

NTR6649, registered 28-08-2017 (available through ICTRP search portal).

摘要

背景

为帕金森病患者(PwPD)选择器械辅助治疗是一个复杂的决策。我们开发了一种共享决策(SDM)干预措施来促进这一决策。在本研究中,我们从患者的角度评估了该干预措施的可行性。

方法

我们采用了多中心、混合方法的可行性研究,采用非对照干预前-后设计。来自荷兰五家医院的五名神经科医生和七名帕金森病护士专家参与了研究。我们的目标是招募20名接受常规决策支持的PwPD进入常规护理组,以及20名接受SDM干预的PwPD。该干预措施包括患者决策辅助工具和专业人员培训。我们通过测量可接受性、实施水平、疗效和研究程序来评估可行性。为了收集数据,我们使用了问卷、访谈、认知测试、咨询记录、实地记录以及患者决策辅助工具的使用情况。

结果

我们将19名PwPD纳入常规护理组,13名纳入干预组。可接受性良好,患者层面的实施水平足够:92%的参与者使用了患者决策辅助工具,其中77%使用了网站,69%使用了价值澄清工具。该干预措施提高了PwPD对治疗选择的认识,然而,它并没有改善共享决策。SDM干预措施未按预期使用,PwPD或专业人员的初始治疗偏好主导了信息交流。

结论

纳入研究的PwPD数量有限。SDM干预措施的可接受性良好,然而,患者决策辅助工具应在医生和患者之间协作使用,以增强共享决策。

试验注册

NTR6649,于2017年8月28日注册(可通过ICTRP搜索门户获取)。

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本文引用的文献

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Shared decision-making in the Netherlands: Progress is made, but not for all. Time to become inclusive to patients.荷兰的共同决策:取得了进展,但并非所有人都受益。现在是让患者具有包容性的时候了。
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Translating Evidence to Advanced Parkinson's Disease Patients: A Systematic Review and Meta-Analysis.
将证据转化应用于晚期帕金森病患者:一项系统评价与荟萃分析
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The Patient's Perspective on Shared Decision-Making in Advanced Parkinson's Disease: A Cross-Sectional Survey Study.帕金森病晚期患者对共同决策的看法:一项横断面调查研究
Front Neurol. 2019 Aug 16;10:896. doi: 10.3389/fneur.2019.00896. eCollection 2019.
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Are Patient Decision Aids Used in Clinical Practice after Rigorous Evaluation? A Survey of Trial Authors.患者决策辅助工具在经过严格评估后是否在临床实践中使用?一项对试验作者的调查。
Med Decis Making. 2019 Oct;39(7):805-815. doi: 10.1177/0272989X19868193. Epub 2019 Aug 17.
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Improving shared decision-making in advanced Parkinson's disease: protocol of a mixed methods feasibility study.改善晚期帕金森病的共同决策:一项混合方法可行性研究方案
Pilot Feasibility Stud. 2018 Jul 4;4:94. doi: 10.1186/s40814-018-0286-4. eCollection 2018.
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Evaluating the feasibility of conducting a trial using a patient decision aid in implantable cardioverter defibrillator candidates: a randomized controlled feasibility trial.评估在植入式心脏复律除颤器候选患者中使用患者决策辅助工具进行试验的可行性:一项随机对照可行性试验。
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Shared Decision Making and Improving Health Care: The Answer Is Not In.共同决策与改善医疗保健:答案尚未揭晓。
JAMA. 2017 Aug 15;318(7):617-618. doi: 10.1001/jama.2017.10168.
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Decision aids for people facing health treatment or screening decisions.为面临医疗治疗或筛查决策的人们提供的决策辅助工具。
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