TY - JOUR
T1 - Needs expressed by people with subjective cognitive decline during amyloid PET disclosure consultations
T2 - An observational study
AU - de Rijke, Tanja J.
AU - Hendriksen, Heleen M.A.
AU - Fruijtier, Agnetha D.
AU - van Harten, Argonde C.
AU - van Leeuwenstijn-Koopman, Mardou S.S.A.
AU - van de Giessen, Elsmarieke M.
AU - Trieu, Calvin
AU - Visser, Denise
AU - Street, Richard L.
AU - van der Flier, Wiesje M.
AU - Smets, Ellen M.A.
AU - Visser, Leonie N.C.
N1 - Publisher Copyright:
© 2025 The Authors
PY - 2025/5
Y1 - 2025/5
N2 - 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.
AB - 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.
KW - Alzheimer's disease
KW - Amyloid PET
KW - Communication
KW - Dementia
KW - Disclosure
KW - Needs
KW - Subjective Cognitive Decline
KW - VR-CoDES-P
UR - http://www.scopus.com/inward/record.url?scp=85216485820&partnerID=8YFLogxK
U2 - 10.1016/j.pec.2025.108668
DO - 10.1016/j.pec.2025.108668
M3 - Article
AN - SCOPUS:85216485820
SN - 0738-3991
VL - 134
JO - Patient Education and Counseling
JF - Patient Education and Counseling
M1 - 108668
ER -