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Table 2 Impression of disclosed amyloid positron emission tomography results

From: Reactions to learning a “not elevated” amyloid PET result in a preclinical Alzheimer’s disease trial

Theme/example quotes N
The scan made the participant ineligible to enroll
 • “All I was told was that I was not eligible to move into the test.… I wasn’t told if I have the amyloid or not. I was just told that I wasn’t eligible, which I interpreted that to mean that if I do have it, it wasn’t at the level necessary to move into the test.” (67-year-old male)
 • “What I just came away with that um, yes I have plaque but not, I didn’t qualify for the test. Now what percentage of plaque I have, I don’t, you know, I didn’t put that in my head to remember that, you know, that I need to know that I have X percentage of plaques. So, I just know that I was told that I didn’t qualify and that’s what I came away with.” (80-year-old female)
26
The scan failed to demonstrate adequate plaque burden
 • “The um level of, uh, amyloid plaque found in my brain was below the cutoff level for the study. They said it was not elevated.” (79-year-old female)
 • “They were looking for people with a certain number of amyloid things in the brain, amyloids or whatever they were. And they wanted people with just enough, not too many and not too few. And I guess the results of mine were that I didn’t have quite enough yet.” (72-year-old male)
17
The scan demonstrated the absence of plaques
 • “They just said I didn’t have any evidence of plaques or any other abnormalities.” (72-year-old male)
 • “Bottom line is I did not have the pathology for Alzheimer’s. That’s all I know.” (78-year-old female)
14
The scan result could change in the future
 • “Oh, and they also said just because I don’t have the amyloids in my brain, that doesn’t mean that I won’t get Alzheimer’s.” (67-year-old female)
 • “It meant that at least that day, when they did the PET scan, I didn’t have amyloids. It was nice to hear, doesn’t mean I won’t get them, but at least I don’t have them on that day. No guarantees.” (69-year-old female)
8
The scan failed to demonstrate adequate tangles
 • “Apparently, I had insufficient plaques and tangles to be considered a viable member of the study.” (66-year-old female)
 • “They uh did not find um, evidence of any of the plaques or tangles that are associated with Alzheimer’s. That’s all I remember.” (68-year-old female)
2
Other
 • “Um, the results were that I was not in the area where the um, I was not in the amyloid area.” (72-year-old female)
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