在粉样蛋白PET披露咨询期间,主观认知衰退患者表达的需求:一项观察性研究
Tanja J de Rijke1, Heleen M A Hendriksen2, Agnetha D Fruijtier2
1Amsterdam UMC location University of Amsterdam, Department of Medical Psychology, Amsterdam, the Netherlands; Amsterdam Public Health Research Institute, Quality of Care, Amsterdam, the Netherlands; Amsterdam Public Health Research Institute, Personalised Medicine, Amsterdam, the Netherlands; Alzheimer Center Amsterdam, Amsterdam UMC location Vrije Universiteit Amsterdam, Department of Neurology, Amsterdam, the Netherlands; Amsterdam Neuroscience, Neurodegeneration, Amsterdam, the Netherlands.
Patient education and counseling
|February 2, 2025
概括
接受粉样蛋白PET扫描的主观认知衰退 (SCD) 患者表达了感觉被理解和了解的重要需求. 了解这些需求对于在披露咨询期间进行有效沟通至关重要.
科学领域:
- 神经学 神经学
- 心理学 心理学 心理学
- 医学沟通 医学沟通
背景情况:
- 主观认知衰退 (SCD) 影响个人经历感知认知变化.
- 粉样蛋白正子发射断层扫描 (PET) 扫描越来越多地用于检测粉样蛋白斑块,这是阿尔茨海默病的生物标志物.
- 粉样PET结果的披露对于SCD患者及其护理伙伴来说可能是一个敏感的过程.
研究的目的:
- 检查SCD患者及其护理伙伴在粉样蛋白PET披露咨询期间表达的需求.
- 探索神经学家的沟通行为,以回应这些表达的需求.
- 确定加强记忆诊所以人为中心的护理的沟通策略.
主要方法:
- 53名患有SCD的个体接受了粉样蛋白PET结果披露.
- 录音咨询 (面对面和电话) 被系统地编码.
- 两个独立研究人员进行了主题分析,以确定需求和沟通模式.
主要成果:
- 确定了1400多种需求表达,分为感觉被认识/理解的需要 (44%) 和了解/理解的需要 (56%).
- 粉样蛋白阳性个体表达了更多的需求,特别是与理解结果相关的需求.
- 神经科医生"提供空间"的沟通方式往往有助于进一步讨论需求.
结论:
- 患有SCD的个体在粉样蛋白PET披露期间有不同的需求,超出信息范围,包括被理解的感觉.
- 粉样蛋白阳性和粉样蛋白阴性结果都引起了不同的需求.
- 需要进一步的研究来制定针对量身定制的,以个人为中心的披露咨询指南.
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