Department of Psychiatry and Neuropsychology, School for Mental Health and Neuroscience, Alzheimer Center Limburg, Maastricht University, Maastricht, the Netherlands.
Donders Institute for Brain, Cognition and Behaviour, Radboud University, Nijmegen, the Netherlands.
Clin Neuropsychol. 2021 Nov;35(8):1398-1414. doi: 10.1080/13854046.2020.1749936. Epub 2020 Apr 17.
The aim of this study was to gain insight into the experiences of patients and their family members regarding a neuropsychological assessment (NPA) and the diagnostic disclosure given by the medical specialist (psychiatrist, geriatrician, or their residents) at the memory clinic (MC).
Patients with and without a cognitive impairment and their family members were recruited from three Dutch MCs. Four focus groups with 14 patients and 13 family members were analyzed using both inductive and deductive content analysis.
Three themes were identified: uncertainty, early diagnostic paradox, and knowledge utilization. High levels of uncertainty were experienced throughout the NPA and diagnostic disclosure. The early diagnostic paradox refers to the coexistence of negative emotions, feeling distressed due to undergoing an NPA that made them aware of their cognitive complaints, and the experience of relief due to insight given by the outcome of the NPA and medical diagnosis. Knowledge utilization refers to a low retention of medical information.
Clinicians can reduce uncertainty by using clear communication, limiting interruptions during an NPA, and paying attention to contextual factors. Low information retention could possibly be improved by involving a family member and using visual aids or written information during the diagnostic disclosure. Finally, participants also appreciated being provided with neuropsychological feedback on the strengths and weaknesses of their cognitive profiles and with guidance on how to manage this diagnosis in their daily lives.
本研究旨在深入了解患者及其家属对神经心理评估（NPA）以及医学专家（精神科医生、老年病医生或其住院医生）在记忆诊所（MC）给出的诊断结果的体验。
从荷兰的三家 MC 招募了认知障碍患者和无认知障碍患者及其家属。使用归纳和演绎内容分析法分析了来自四个焦点小组的 14 名患者和 13 名家属的信息。
确定了三个主题：不确定性、早期诊断悖论和知识利用。在 NPA 和诊断披露过程中，患者及其家属经历了高度的不确定性。早期诊断悖论是指负面情绪的共存，他们因接受 NPA 而感到痛苦，因为这使他们意识到自己的认知问题，但由于 NPA 和医学诊断的结果提供了洞察力，他们也感到如释重负。知识利用是指对医学信息的保留率低。
临床医生可以通过清晰的沟通、在 NPA 期间限制中断以及关注背景因素来减少不确定性。通过让家属参与并在诊断披露期间使用视觉辅助工具或书面信息，可能会提高信息保留率。最后，参与者还希望在认知概况的优势和劣势方面得到神经心理学反馈，并获得有关如何在日常生活中应对这一诊断的指导。
