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本文引用的文献

1
Clinicians' views on conversations and shared decision making in diagnostic testing for Alzheimer's disease: The ABIDE project.临床医生对阿尔茨海默病诊断测试中对话及共同决策的看法：ABIDE项目
Alzheimers Dement (N Y). 2017 May 10;3(3):305-313. doi: 10.1016/j.trci.2017.03.009. eCollection 2017 Sep.
2
Alzheimer's biomarkers in daily practice (ABIDE) project: Rationale and design.日常实践中的阿尔茨海默病生物标志物（ABIDE）项目：原理与设计
Alzheimers Dement (Amst). 2017 Jan 23;6:143-151. doi: 10.1016/j.dadm.2017.01.003. eCollection 2017.
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What Is Shared Decision Making? (and What It Is Not).什么是共同决策？（以及它不是什么）。
Acad Emerg Med. 2016 Dec;23(12):1320-1324. doi: 10.1111/acem.13065. Epub 2016 Nov 25.
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The challenges of shared decision making in dementia care networks.痴呆症护理网络中共享决策制定的挑战。
Int Psychogeriatr. 2018 Jun;30(6):843-857. doi: 10.1017/S1041610216001381. Epub 2016 Sep 9.
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Shared decision-making as an existential journey: Aiming for restored autonomous capacity.作为一种生存之旅的共同决策：旨在恢复自主能力。
Patient Educ Couns. 2016 Sep;99(9):1505-10. doi: 10.1016/j.pec.2016.07.014. Epub 2016 Jul 7.
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Shared Decision Making: The Need For Patient-Clinician Conversation, Not Just Information.共同决策：需要医患对话，而非仅仅提供信息。
Health Aff (Millwood). 2016 Apr;35(4):627-9. doi: 10.1377/hlthaff.2015.1354.
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Shared decision-making in dementia: A review of patient and family carer involvement.痴呆症的共同决策：患者和家属参与情况综述。
Dementia (London). 2016 Sep;15(5):1141-57. doi: 10.1177/1471301214555542. Epub 2014 Nov 3.
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How are decisions on care services for people with dementia made and experienced? A systematic review and qualitative synthesis of recent empirical findings.针对痴呆症患者的护理服务决策是如何做出的以及人们对此有何体验？近期实证研究结果的系统评价与质性综合分析
Int Psychogeriatr. 2014 Nov;26(11):1849-62. doi: 10.1017/S104161021400132X. Epub 2014 Jul 15.
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Current knowledge and future directions about the disclosure of dementia: a systematic review of the first decade of the 21st century.关于痴呆症披露的现有知识和未来方向：21 世纪第一个十年的系统回顾。
Alzheimers Dement. 2013 Mar;9(2):e74-88. doi: 10.1016/j.jalz.2012.02.006. Epub 2012 Oct 24.
10
Cumulative complexity: a functional, patient-centered model of patient complexity can improve research and practice.累积复杂性：一种以功能为中心、以患者为中心的患者复杂性模型可以改进研究和实践。
J Clin Epidemiol. 2012 Oct;65(10):1041-51. doi: 10.1016/j.jclinepi.2012.05.005.

患者及照护者对阿尔茨海默病诊断检测中对话及共同决策的看法：ABIDE项目

Patients' and caregivers' views on conversations and shared decision making in diagnostic testing for Alzheimer's disease: The ABIDE project.

作者信息

Kunneman Marleen, Pel-Littel Ruth, Bouwman Femke H, Gillissen Freek, Schoonenboom Niki S M, Claus Jules J, van der Flier Wiesje M, Smets Ellen M A

机构信息

Department of Medical Psychology, Academic Medical Center, Amsterdam, The Netherlands.

Vilans Centre of Expertise for Long-Term Care, Utrecht, The Netherlands.

出版信息

Alzheimers Dement (N Y). 2017 May 10;3(3):314-322. doi: 10.1016/j.trci.2017.04.002. eCollection 2017 Sep.

DOI:10.1016/j.trci.2017.04.002
PMID:29067338
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC5651429/
Abstract

INTRODUCTION

This study aims to assess patients' and caregivers' views on and experiences with (1) decisions about diagnostic testing for Alzheimer's disease (AD) and (2) receiving test results.

METHODS

We conducted separate focus groups with patients from three hospitals who underwent diagnostic testing for AD ( = 11) and their caregivers ( = 11). Audio recordings were transcribed verbatim and analyzed using MaxQDA.

RESULTS

Patients and caregivers preferred and perceived active involvement in decision making, but the decision to initiate diagnostic testing seems to be made before the clinician-patient encounter. Patients and caregivers indicate that decisions are driven by a strong need to explain the patient's symptoms. They missed information on why different diagnostic tests were used, what the results of these tests were, and to what extent these results were (ab)normal.

DISCUSSION

The decision-making process around diagnostic testing for AD and the information provision before and after diagnostic testing could be improved.

摘要

引言

本研究旨在评估患者及其护理人员对（1）阿尔茨海默病（AD）诊断检测决策以及（2）接收检测结果的看法和经历。

方法

我们对来自三家医院接受AD诊断检测的患者（n = 11）及其护理人员（n = 11）分别进行了焦点小组访谈。录音逐字转录，并使用MaxQDA进行分析。

结果

患者和护理人员倾向于并认为应积极参与决策，但启动诊断检测的决定似乎在医患会面之前就已做出。患者和护理人员表示，决策是由解释患者症状的强烈需求驱动的。他们缺少关于为何使用不同诊断检测、这些检测的结果是什么以及这些结果在何种程度上正常（或异常）的信息。

讨论

AD诊断检测的决策过程以及诊断检测前后的信息提供可以得到改善。