Needs expressed by people with subjective cognitive decline during amyloid PET disclosure consultations: An observational study

IF 3.1 2区医学 Q2 PUBLIC, ENVIRONMENTAL & OCCUPATIONAL HEALTH Patient Education and Counseling Pub Date : 2025-05-01 Epub Date: 2025-01-27 DOI:10.1016/j.pec.2025.108668

Tanja J. de Rijke , Heleen M.A. Hendriksen , Agnetha D. Fruijtier , Argonde C. van Harten , Mardou S.S.A. van Leeuwenstijn-Koopman , Elsmarieke M. van de Giessen , Calvin Trieu , Denise Visser , Richard L. Street Jr. , Wiesje M. van der Flier , Ellen M.A. Smets , Leonie N.C. Visser

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Abstract

Objectives

We disclosed amyloid PET results to people with subjective cognitive decline (SCD) and analysed audiotaped consultations. The aim was to examine the needs expressed by people with SCD and their care partners during amyloid PET disclosure consultations, and to explore neurologists’ communication behaviours surrounding these expressions of need.

Methods

53 persons with SCD (65 ± 7.6 yrs, 18(34 %) female, MMSE 29 ± 1.4, 14(26 %) amyloid-positive, 10(18.9 %) attended with care partner) who wished to learn their amyloid PET results were included. We audiotaped disclosure consultations (54.7 % face-to-face, 45.3 % telephone). Systematic coding using inductive and deductive elements was performed and followed by thematic analysis by two independent researchers.

Results

We observed 1434 needs expressions, on average 27(±23) per consultation. The needs expressed could be categorized into two main overarching themes: the need to feel known and understood (44 %) and the need to know and understand (56 %). Amyloid-positive persons expressed significantly more needs (t (14.3)= -2.249, p = 0.041), especially regarding the need to know and understand. Neurologists frequently responded with ‘providing space’ reactions (68.6 %), which often led to continued discussions about people’s needs.

Conclusion

This study shows that people with SCD receiving their amyloid PET-scan results have a considerable number and variety of needs. Despite of the large variation in the content of these needs, we identified two main themes implying that people with SCD do not only want information, but also want to feel known and understood. Although the average number of expressed needs was higher among people with an amyloid positive scan, people with a negative scan also expressed a variety of needs. Further research is needed to inform guidelines for tailoring amyloid PET disclosure consultations to individual needs, thereby enhancing person-centred care in memory clinic settings.

Implications

People with SCD, care partners, and neurologists can use these results to prepare for amyloid PET disclosure consultations.

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在淀粉样蛋白PET披露咨询中，主观认知能力下降的人表达的需求：一项观察性研究。

目的：我们向主观认知衰退（SCD）患者披露淀粉样蛋白PET结果，并分析录音咨询。目的是检查SCD患者及其护理伙伴在淀粉样蛋白PET披露咨询期间表达的需求，并探索神经学家围绕这些需求表达的沟通行为。方法：纳入53例SCD患者（65例 ± 7.6 岁，18例（34 %）女性，29例 ± 1.4,14例（26 %）淀粉样蛋白阳性，10例（18.9 %）有护理伙伴陪同），希望了解其淀粉样蛋白PET结果。我们对披露咨询进行录音（54.7% %面对面，45.3% %电话）。系统编码使用归纳和演绎元素进行，然后由两位独立的研究人员进行专题分析。结果：共观察到1434个需求表达，平均每次咨询27（±23）个。所表达的需求可以分为两个主要的主题：感觉被了解和理解的需求（44% %）和了解和理解的需求（56% %）。淀粉样蛋白阳性的人表达了更多的需求（t(14.3)= -2.249,p = 0.041），特别是关于了解和理解的需求。神经科医生经常以“提供空间”的反应（68.6% %）回应，这通常会导致对人们需求的持续讨论。结论：本研究表明，接受淀粉样蛋白pet扫描结果的SCD患者有相当数量和多样化的需求。尽管这些需求的内容差异很大，但我们确定了两个主要主题，这意味着SCD患者不仅想要信息，还想要被了解和理解。尽管淀粉样蛋白扫描呈阳性的人表达需求的平均数量更高，但扫描呈阴性的人也表达了多种需求。需要进一步的研究来为根据个人需求定制淀粉样蛋白PET披露咨询的指导方针提供信息，从而在记忆诊所环境中加强以人为本的护理。意义：SCD患者、护理伙伴和神经科医生可以使用这些结果为淀粉样蛋白PET披露咨询做准备。

本文章由计算机程序翻译，如有差异，请以英文原文为准。

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来源期刊

Patient Education and Counseling 医学-公共卫生、环境卫生与职业卫生

CiteScore

5.60

自引率

11.40%

发文量

384

审稿时长

46 days

期刊介绍： Patient Education and Counseling is an interdisciplinary, international journal for patient education and health promotion researchers, managers and clinicians. The journal seeks to explore and elucidate the educational, counseling and communication models in health care. Its aim is to provide a forum for fundamental as well as applied research, and to promote the study of organizational issues involved with the delivery of patient education, counseling, health promotion services and training models in improving communication between providers and patients.