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Table 3 Reactions to 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
Learning the result caused relief
 • “Well, actually it was a relief really because they said it would be unlikely that I would get Alzheimer’s and given the fact that I have several members in my family that have that, it was actually a relief, because I thought, oh well I don’t have to deal with that one, it will be something else that I’ll die from probably.” (78-year-old female)
 • “It was a big relief to me. It really made my day and it’s making my day all today, every day, to know that I don’t have that. That if I have it, it’s not that bad or that serious or anything like that, you know, I’m pretty okay. Pretty much.” (77-year-old female)
Learning the result caused disappointment that the participant could not continue in the study
 • “Well I didn’t get to go through any more tests. The tests seemed to be, at times, fun. So, you pulled the joy plug.” (80-year-old male)
 • “I guess one feeling was disappointment because we couldn’t continue. Um, we had become invested in it to some extent. It became something that we were really interested in, um…, so I felt disappointed that we weren’t going to continue.” (74-year-old female)
The result was unexpected or caused surprise
 • “Um, I assumed because of my twin brother that I would have at least some elevated levels. I was quite surprised to the point of tears when [the study physician] told me.” (77-year-old male)
 • “I was very surprised because I really expected something different. I expected that there was already something happening because it started early in my mother. So I was pleasantly surprised, but um, it was excellent.” (69-year-old female)
The result meant that the participant was at relatively lower risk for AD
 • “But it also meant that I’m not about to experience Alzheimer’s disease any time soon. Um, possibly later I could, uh, but um, I also was glad that I could tell my children that their level of risk is not too high.” (79-year-old female)
 • “It meant that um … I could not be in the study because I may not have, I have a lesser chance of having Alzheimer’s disease, but that doesn’t mean that I won’t have it.” (78-year-old female)
The result was expected
 • “Well, it just kind of validated what I probably already thought because I know that Alzheimer’s is a hereditary disease and since neither one of my parents had it, any sense of it, they were both sharp as a tack until the day that they died. Um, so that was not a surprise, but it was still interesting to know and comforting to know that um, I didn’t have that pathology.” (78-year-old female)
 • “I feel I’m functioning pretty well, so I didn’t expect any abnormalities. Um, also, my family history is one that, um, nobody has had Alzheimer’s in my side of the family.” (72-year-old male)
The result meant that the participant is not at risk for AD
 • “It meant that I probably will not have Alzheimer’s disease.” (70-year-old female)
 • “I mean at least for as much as research has gotten to the point of thinking that plaques and tangles may be important, um, you know, then since I don’t have them yet or at least not in large quantity, that would suggest that at least one form of dementia is not in my future.” (66-year-old female)
The participant desired to learn more information about the scan result, beyond the information disclosed
 • “But then I asked well, the level, I mean you got a grading of the level, what is it? He says, well we can’t tell you that. In fact, they don’t even know, the people who were doing the research don’t. I think we were told at the beginning, but anyway, so it’s, it’s, that doesn’t matter. I mean, it would’ve been nice if I’d known what it was, but I knew going in that they wouldn’t give me that number anyway.” (77-year-old male)
 • “Um, well it didn’t mean much. We just knew that we didn’t have a severe problem, and that’s reassuring. Um, but, you know we could you know, have a 9% plaque buildup and we wouldn’t know that sort of thing.” (78-year-old male)
The result reinforced the participant’s choices related to lifestyle
 • “So for me it reinforced my belief that whatever it is that I’m continuing to do in my life, or whatever I’m doing in terms of trying to take care of my brain, I should continue to do it as much as possible.” (67-year-old male)