AUTHORS: Caprioglio C, Ribaldi F, Visser LNC, Minguillon C, Collij LE, Grau-Rivera O, Zeyen P, Molinuevo JL, Gispert JD, Garibotto V, Moro C, Walker Z, Edison P, Demonet JF, Barkhof F, Scheltens P, Alves IL, Gismondi R, Farrar G, Stephens AW, Jessen F, Frisoni GB, Altomare D

, 6(1): e2250921, January 2023



Individuals who are amyloid-positive with subjective cognitive decline and clinical features increasing the likelihood of preclinical Alzheimer disease (SCD+) are at higher risk of developing dementia. Some individuals with SCD+ undergo amyloid-positron emission tomography (PET) as part of research studies and frequently wish to know their amyloid status; however, the disclosure of a positive amyloid-PET result might have psychological risks.

OBJECTIVE To assess the psychological outcomes of the amyloid-PET result disclosure in individuals with SCD+ and explore which variables are associated with a safer disclosure in individuals who are amyloid positive.

DESIGN, SETTING, AND PARTICIPANTS This prospective, multicenter study was conducted as part of The Amyloid Imaging to Prevent Alzheimer Disease Diagnostic and Patient Management Study (AMYPAD-DPMS) (recruitment period: from April 2018 to October 2020). The setting was 5 European memory clinics, and participants included patients with SCD+ who underwent amyloidPET. Statistical analysis was performed from July to October 2022.

EXPOSURES Disclosure of the amyloid-PET result.

MAIN OUTCOMES AND MEASURES Psychological outcomes were defined as (1) disclosure-related distress, assessed using the Impact of Event Scale–Revised (IES-R; scores of at least 33 indicate the probable presence of posttraumatic stress disorder [PTSD]); and (2) anxiety and depression, assessed using the Hospital Anxiety and Depression scale (HADS; scores of at least 15 indicate probable presence of severe mood disorder symptoms).

RESULTS After disclosure, 27 patients with amyloid-positive SCD+ (median [IQR] age, 70 [66-74] years; gender: 14 men [52%]; median [IQR] education: 15 [13 to 17] years, median [IQR] Mini-Mental State Examination [MMSE] score, 29 [28 to 30]) had higher median (IQR) IES-R total score (10 [2 to 14] vs 0 [0 to 2]; P < .001), IES-R avoidance (0.00 [0.00 to 0.69] vs 0.00 [0.00 to 0.00]; P < .001), IES-R intrusions (0.50 [0.13 to 0.75] vs 0.00 [0.00 to 0.25]; P < .001), and IES-R hyperarousal (0.33 [0.00 to 0.67] vs 0.00 [0.00 to 0.00]; P < .001) scores than the 78 patients who were amyloid negative (median [IQR], age, 67 [64 to 74] years, 45 men [58%], median [IQR] education: 15 [12 to 17] years, median [IQR] MMSE score: 29 [28 to 30]). There were no observed differences between amyloid-positive and amyloid-negative patients in the median (IQR) HADS Anxiety (–1.0 [–3.0 to 1.8] vs –2.0 [–4.8 to 1.0]; P = .06) and Depression (–1.0 [–2.0 to 0.0] vs –1.0 [–3.0 to 0.0]; P = .46) deltas (score after disclosure – scores at baseline). In patients with amyloid-positive SCD+, despite the small sample size, higher education was associated with lower disclosure-related distress (ρ = –0.43; (continued) Key Points Question What are the psychological symptoms following disclosure of a positive amyloid–positron emission tomography (PET) imaging result on patients with subjective cognitive decline? Findings This study of 105 patients found that the disclosure of a positive amyloid-PET result was associated with a greater psychological change, yet such changes did not reach the threshold for clinical concern. Meaning These findings suggest that the disclosure of a positive amyloid-PET result in patients with subjective cognitive decline was not associated with clinically meaningful psychological risk. + Invited Commentary + Supplemental content Author affiliations and article information are listed at the end of this article. Open Access. This is an open access article distributed under the terms of the CC-BY License P = .02) whereas the presence of study partner was associated with higher disclosure-related distress (W = 7.5; P = .03). No participants with amyloid-positive SCD+ showed probable presence of PTSD or severe anxiety or depression symptoms at follow-up.

CONCLUSIONS AND RELEVANCE The disclosure of a positive amyloid-PET result to patients with SCD+ was associated with a bigger psychological change, yet such change did not reach the threshold for clinical concern.