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

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.