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.
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。
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