Department of Neurology, Alzheimer Center Amsterdam, Amsterdam Neuroscience, Vrije Universiteit Amsterdam, Amsterdam UMC, Boelelaan 1118, 1081 HZ, Amsterdam, The Netherlands.
Department of Medical Psychology, Amsterdam Public Health Research Institute, University of Amsterdam, Amsterdam UMC, Amsterdam, The Netherlands.
Alzheimers Res Ther. 2019 Aug 31;11(1):77. doi: 10.1186/s13195-019-0531-y.
Information given to patients and caregivers during the clinician-patient encounter varies considerably between memory clinic professionals. Patients and caregivers express a clear desire for more information. It is unclear what information patients and caregivers value most during the diagnostic process and whether this is concordant with professionals' opinion. We aimed to identify a topic list on which health care professionals, patients, and caregivers agree that these should be discussed during diagnostic consultations in memory clinics. Further, we aimed to establish the optimal moment for each topic to be discussed during the diagnostic process.
We performed a three-round Delphi consensus study. Professionals (N = 80), patients (N = 66), and caregivers (N = 76) rated the importance of 44 informative topics through an online questionnaire. Consensus was defined as a topic rating of 6 or 7 on a 7-point Likert scale by ≥ 75% of each panel. In round 2 and 3, a survey was added to identify the optimal moment during the diagnostic process to discuss each topic.
By round 3, consensus was achieved on 17 topics divided into four categories, information about (1) diagnostic testing, (2) test results, (3) diagnosis, and (4) practical implications. Eight additional topics showed significant differences between panels. Most notable panel differences regard the risk for developing dementia and the distinction between Alzheimer's disease and dementia, which patients and caregivers evaluated as more important compared to professionals. The optimal moment to discuss topics during the diagnostic process was identified for the 17 core topics, and the eight topics with significant differences.
We present a core list of informative topics, which professionals, patients, and caregivers agree they should be discussed during the diagnostic process in a memory clinic. The topic list can support professionals and empower patients and caregivers during diagnostic physician-patient consultations.
在临床医生与患者的交流中，记忆诊所的专业人员之间的信息差异很大。患者和护理人员明确表示希望获得更多信息。目前尚不清楚在诊断过程中患者和护理人员最看重哪些信息，以及这是否与专业人员的意见一致。我们旨在确定一个主题清单，使医疗保健专业人员、患者和护理人员都认为这些主题应该在记忆诊所的诊断咨询中讨论。此外，我们旨在确定在诊断过程中每个主题的最佳讨论时间。
我们进行了三轮德尔菲共识研究。专业人员（N=80）、患者（N=66）和护理人员（N=76）通过在线问卷对 44 个有信息价值的主题的重要性进行了评分。通过每个小组的 75%以上的成员对 7 点李克特量表进行 6 或 7 的评分，就达成了共识。在第 2 轮和第 3 轮，增加了一项调查，以确定在诊断过程中讨论每个主题的最佳时机。
到第 3 轮，就 17 个主题达成了共识，这些主题分为四个类别，分别是（1）诊断测试、（2）测试结果、（3）诊断和（4）实际影响。另外 8 个主题在小组之间存在显著差异。最值得注意的是小组之间的差异，涉及到患痴呆症的风险和阿尔茨海默病与痴呆症的区别，患者和护理人员认为这些主题比专业人员更重要。在诊断过程中讨论这些主题的最佳时机已确定为 17 个核心主题和 8 个具有显著差异的主题。
我们提出了一份信息丰富的主题清单，专业人员、患者和护理人员都同意在记忆诊所的诊断过程中讨论这些主题。该主题清单可以为专业人员提供支持，并在诊断医患咨询中为患者和护理人员赋权。
