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Original Investigation
October 23, 2017

Comprehension of an Elevated Amyloid Positron Emission Tomography Biomarker Result by Cognitively Normal Older Adults

Author Affiliations
  • 1Department of Medical Ethics and Health Policy, Perelman School of Medicine, University of Pennsylvania, Philadelphia
  • 2Now with the Division of General Medical Sciences, John T. Milliken Department of Medicine, Washington University School of Medicine, St Louis, Missouri
  • 3Penn Memory Center at the Penn Neuroscience Center, Philadelphia, Pennsylvania
  • 4Now with the Lewis Katz School of Medicine at Temple University, Philadelphia, Pennsylvania
  • 5Department of Medicine, Perelman School of Medicine, University of Pennsylvania, Philadelphia
  • 6Department of Neurology, Perelman School of Medicine, University of Pennsylvania, Philadelphia
JAMA Neurol. Published online October 23, 2017. doi:10.1001/jamaneurol.2017.2954
Key Points

Question  How do cognitively unimpaired adults with an elevated amyloid positron emission tomographic biomarker result comprehend this biomarker of Alzheimer disease?

Findings  Analyses of interviews with 50 participants in the Anti-Amyloid Treatment in Asymptomatic Alzheimer study indicated that most participants understood that elevated amyloid conferred an increased but uncertain risk of developing Alzheimer disease and desired clarification of the term elevated beyond its being a categorical result enabling trial entry eligibility.

Meaning  Future Alzheimer disease biomarker clinical trials and educational materials could be enhanced by including explanations of how and why dimensional biomarkers are converted to categories.

Abstract

Importance  The goal of Alzheimer disease (AD) prevention together with advances in understanding the pathophysiology of AD have led to clinical trials testing drugs in cognitively unimpaired persons who show evidence of AD biomarkers. Data are needed to inform the processes of describing AD biomarkers to cognitively normal adults and assessing their understanding of this knowledge.

Objective  To determine the comprehension of an elevated amyloid positron emission tomographic (PET) biomarker result by cognitively unimpaired adults.

Design, Setting, and Participants  The Study of Knowledge and Reactions to Amyloid Testing, a substudy of an AD prevention trial, involved 2 semistructured telephone interviews with 80 participants recruited from 9 study sites: 50 received elevated and 30 received not elevated amyloid PET scan results. Interviews were conducted 4 to 12 weeks after result disclosure and again 1 year later. Data presented here were collected from November 5, 2014, through December 10, 2015. The 50 participants included in this study were cognitively normal, aged 65 to 85 years, evenly distributed by gender, and had elevated amyloid PET results. Subsequent reports will examine persons with “not elevated” results and compare the influence of the different results.

Main Outcomes and Measures  Participant comprehension of an elevated amyloid result was assessed by analyzing their responses to the following questions: “What was the result of your amyloid PET scan?” (followed by “Can you tell me in your own words what that means?” or “How would you explain it to a friend?”), “Was it the result you expected?” and “Did the result teach you anything or clarify anything for you?”

Results  Of the 50 participants aged 65 to 85 years, 49 (98%) were white, 40 (80%) reported a family history of AD, and 30 (60%) had a postgraduate educational level. Most participants (31 [62%]) understood that elevated amyloid conferred an increased but uncertain risk of developing AD. Some desired understanding of the term elevated other than its being a categorical result enabling trial entry eligibility; they wanted information regarding how elevated their amyloid was, how close to the study threshold they were, or percentages, numbers, or a scale to help them make sense of the result.

Conclusions and Relevance  Including an explanation of how and why a dimensional biomarker is converted to a categorical classification would enhance future AD biomarker clinical trials and educational materials.

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