Amyloid PET disclosure in subjective cognitive decline: Patient experiences over time

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

 

Abstract

Introduction

We disclosed amyloid positron emission tomography (PET) results in individuals with subjective cognitive decline (SCD) and studied patient experiences and outcomes over a 6-month period.

Methods

Fifty-seven participants from the Subjective Cognitive Impairment Cohort (SCIENCe) (66 ± 8 years, 21 [37%] F, Mini-Mental State Examination 29 ± 1, 15 [26%] amyloid positive [A+]) completed questionnaires 1 week prior (T0), 1 day after (T1), and 6 months after amyloid PET disclosure (T2). Questionnaires addressed patient-reported experiences and outcomes.

Results

Independent of amyloid status, participants were satisfied with the consultation (scale 1–10; 7.9 ± 1.7) and information provided (scale 1–4; T1: 3.3 ± 0.9, T2: 3.2 ± 0.8). After 6 months, A+ participants reported more information needs (45% vs. 12%, p = 0.02). Independent of amyloid status, decision regret (scale 1–5; A+: 1.5 ± 0.9, A−: 1.4 ± 0.6, p = 0.53) and negative emotions (negative affect, uncertainty, anxiety) were low (all p > 0.15 and P_interaction > 0.60).

Conclusions

Participants with SCD valued amyloid PET disclosure positively, regardless of amyloid status. The need for information after 6 months, which was stronger in A+ individuals, underscores the importance of follow-up.