Analysis of Psychological Symptoms Following Disclosure of Amyloid-Positron Emission Tomography Imaging Results to Adults With Subjective Cognitive Decline

Abstract

Importance: 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 amyloid-PET. Statistical analysis was performed from July to October 2022.

Exposures: Disclosure of 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 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; 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.

Figure 1.. Association of the Amyloid–Positron Emission Tomography Disclosure With Disclosure-Related Distress in Individuals With Subjective Cognitive Decline Plus Who Had Amyloid-Positive and Amyloid-Negative Results

Impact of Events Scale–Revised (IES-R) total score (range, 0-88; at least 33 indicates probable presence of a posttraumatic stress disorder). Submeasures include IES-R Avoidance Score, Intrusion Score, and Hyperarousal Score (range, 0-4, no thresholds available). IES-R was administered 1 to 3 days after the amyloid–positron emission tomography result disclosure. The horizontal line inside the box indicates the median; lower and upper hinges of the box, 25th and 75th percentiles, respectively; lower whisker, smallest observation greater than or equal to lower hinge − 1.5 × IQR; upper whisker, largest observation less than or equal to upper hinge + 1.5 × IQR; and individual points (when present), outliers. ^aIndicates statistically significant difference (P < .05).

Figure 2.. Association of the Amyloid–Positron Emission Tomography Disclosure With Anxiety and Depression in Individuals With Subjective Cognitive Decline Plus Who Had Amyloid-Positive or Amyloid-Negative Results

Hospital Anxiety and Depression scale (HADS) Anxiety and Depression scores (range 0-21, at least 15 indicates severe anxiety and/or depression symptoms). HADS was administered at baseline and after the amyloid-PET result disclosure. Dashed horizontal lines represent the threshold defining at least mild (HADS score ≥8) anxiety and/or depression symptoms. The prevalence of at least mild anxiety symptoms at follow-up was 30% (8 of 27 individuals) in individuals with amyloid-positive PET findings and 13% (10 of 78 individuals; χ² = 2.9, P = .09) in individuals with amyloid-negative PET findings. The prevalence of at least mild depression symptoms at follow-up was 11% (3 of 27 individuals) in individuals with amyloid-positive PET findings and 4% (3 of 78 individuals; χ² = 0.8, P = .36) in individuals with amyloid-negative PET findings.

Figure 3.. Variables Associated With a Safer Disclosure in Individuals With Subjective Cognitive Decline Plus and Amyloid-Positive Results

A, The horizontal line inside the box indicates the median; lower and upper hinges of the box, 25th and 75th percentiles, respectively; lower whisker, smallest observation greater than or equal to lower hinge − 1.5 × IQR; upper whisker, largest observation less than or equal to upper hinge + 1.5 × IQR; and individual points (when present), outliers. B, line indicates regression estimate; shading, 95% CI; dots, individual data points. ^aIndicates statistically significant difference (P < .05).