Reasons for undergoing amyloid imaging among cognitively unimpaired older adults

Abstract

Objectives Preclinical Alzheimer’s disease (AD) clinical trials screen cognitively unimpaired older adults for biomarker criteria and disclose their results. We examined whether participants in the Anti‐Amyloid Treatment in Asymptomatic Alzheimer’s disease Study with “elevated” and “not elevated” amyloid differed in scores on the “Views and Perceptions of Amyloid Imaging” questionnaire. We hypothesized that, prior to disclosure, those with elevated amyloid would score higher than those with not elevated amyloid. We also quantified how responses changed after result disclosure. Methods We assessed data from 4327 individuals who completed the questionnaire at screening visit 1 and after amyloid disclosure. We used linear regression models to assess the relationship between questionnaire category scores and amyloid status. We also quantified the relationship between category score changes and amyloid status. Results Overall, participants scored altruism and contribution to research as the strongest motivations for undergoing amyloid imaging. Those with elevated amyloid scored 0.23 points higher in the Perceived Risk category, on average, than those who had not elevated amyloid prior to disclosure; this effect attenuated towards zero after adjusting for Cognitive Function Instrument score. After disclosure, participants with elevated amyloid demonstrated less within‐subject change in Perceived Risk, on average, compared to those with similar pre‐disclosure scores who had not elevated amyloid, while demonstrating greater changes in the altruism and planning categories. Interpretation Altruism and learning disease risk motivated enrollment in this preclinical AD trial. Participants with elevated amyloid differed from their not elevated counterparts in their perceptions of amyloid imaging, even before undergoing the procedure.

What Influences the Willingness of Blacks and African Americans to Enroll in Preclinical Alzheimer’s Disease Biomarker Research? A Qualitative Vignette Analysis

“…For a handful of participants ( n = 5), this altruism was linked to specific desire to help the Black/African American community through research. This finding is similar to other work that has shown altruism to be an important motivator for joining AD biomarker research [ 27, 57 ]. Altruism is a major factor motivating participation in AD research among Blacks/African Americans [ 28 ].…”

“…In an analysis of interest in a preclinical AD trial, participants were just as willing to join a study where they learned their biomarker results as one in which they did not, indicating reasons other than learning amyloid results may drive actual participation [ 25 ]. Other reasons influencing participants may include the invasiveness of procedures involved [ 26 ], or an altruistic desire to contribute to research [ 27 ].…”

Anticipated reactions to learning Alzheimer’s disease biomarker results

“…(If you learned that your brain marker results were high and you were at higher risk of developing Alzheimer’s) How likely is it that you would be less confident about your ability to carry out daily activities? < 1 > Not at all < 2 > A little < 3 > Somewhat < 4 > Very < 5 > Extremely Footnote : a Items adapted from “Views and Perceptions of Amyloid Imaging” Questionnaire [ 15 ] …”

“… a Items cross-loaded on both factors b Items adapted from “Views and Perceptions of Amyloid Imaging” Questionnaire[ 15 ] c Cutoffs for model fit indices: CFI ≥ 0.95, RMSEA ≤ 0.08, SRMR ≤ 0.08 Note : All factor loadings are significant at p < .001 …”

“…Two open-ended questions assessed reasons for response and any concerns about the biomarker study with results disclosure. Eight items on reasons for learning amyloid PET results were adapted from an existing questionnaire [ 14 , 15 ]. Thirty-three items assessed anticipated reactions to learning high-risk (e.g., positive) biomarker results on a 5-point Likert scale.…”