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

IF 2.9 2区医学 Q2 PUBLIC, ENVIRONMENTAL & OCCUPATIONAL HEALTH Patient Education and Counseling Pub 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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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.