Background
Methods
Recruitment
Diagnostic consultation for amyloid PET disclosure
Data collection and analysis
Visual assessment of amyloid PET scans
Interviews and data analysis
Results
Study population
Demographic characteristics | Amyloid-positive (n = 8) | Amyloid-negative (n = 30) |
p Value |
Age, years, mean ± SD (range) | 74.8 ± 4.8 (66–81) | 69.8 ± 6.6 (55–83) | 0.057 |
Sex, female/male, n | 3/5 | 13/17 | – |
Years of education, mean ± SD (range) | 13.4 ± 3.4 (8–19) | 13.1 ± 3.8 (8–22) | 0.679 |
Neuropsychological evaluation | Amyloid-positive, mean ± SD (range) | Amyloid-negative, mean ± SD (range) | |
Global Clinical Dementia Rating | 0.5 | 0.5 | – |
Cornell Scale for Depression in Dementia | 1.5 ± 1.3 (0–3) | 3.6 ± 3.1 (0–13) | 0.066 |
Mini Mental State Examination (total possible score of 30) | 27.0 ± 2.0 (25–30) | 28.5 ± 1.2 (25–30) | 0.047 |
Auditory Verbal Learning Test (AVLT) total learning (total possible score of 75) | 29.1 ± 4.1 (23–33) | 38.1 ± 10.5 (21–62) | 0.011 |
AVLT long-term percentage delayed recall | 45.9 ± 47.7 (0–133.3) | 65.9 ± 21.9 (11.1–111.1) | 0.062 |
Recall of individual amyloid PET scan result
“Explanation, amyloid tissue in the brain. I don’t know anymore what exactly has been said.” (66-year-old woman).
Emotional aspects associated with amyloid PET scan disclosure
Two weeks after disclosure
Six months after disclosure
Informing others, or not?
Two weeks after disclosure
Reasons to inform others (by majority of amyloid-positive patients) | Reasons not to inform others (by large group of amyloid-negative patients) |
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• Other people would know what is going on with them. • Other people can help the patient and take the patient’s situation into account. • Sooner or later, other people will notice what is going on with the patient. • Because it can do the patient well to talk to other people who can understand their problem. | • The decision was made together with the partner before the disclosure of the amyloid PET scan result about whom they would inform once the result was known. • Once you inform others, you have no control of the information. This could result in people who start to perceive the patient differently or that others start to generalize that the patient already has dementia. • Some people do not know how to respond to bad news. In particular, for younger people, it might be difficult to understand the memory complaints of the participant. • The amyloid PET scan result is your personal and thus private information. • It is uninformative news to tell owing to the negative amyloid PET scan result. If they had received a positive test result, they would have informed their inner circle of family and friends. |
“And I do know that it is not something that stays with the people but that will be told to others, and before you know it, you get a name glued on you that is much worse than what is going on. Then I think you gradually become shut down from groups you work with, the people you are busy with, and so on. I do not live alone in society. I still live together with a few people around me, and I have a bit of fear that there is too much chatting about that.” (79-year-old man)
Six months after disclosure
“I still find it very difficult to tell it to strangers or to talk about it with people. With the children it is okay, but with other people I still have the feeling I want to hide it as long as possible.” (66-year-old woman)
Experienced advantages
Two weeks after disclosure
Patients with an amyloid-positive test result | Patients with an amyloid-negative test result |
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Two weeks after disclosure: 1. More contact with family 2. Early diagnosis 3. Practical arrangements 4. Medication 5. Clarification to know what is going on with their health Six months after disclosure: Similarities: 1. Early diagnosis 2. Medication 3. Clarification to know what is going on with their health 4. Practical arrangements: tricks for memory complaints Newly mentioned advantages: 1. To enjoy life more 2. More and closer follow-up 3. Better for relationship 4. Reassurance/relief Not mentioned after 6 months: 1. More contact with family | Two weeks after disclosure: 1. To know the news as early as possible 2. To resume normal lifestyle 3. To enjoy life more 4. Planning arrangements in the long term 5. To accept memory complaints better 6. Clarification to know what is going on with their health 7. Reassurance/relief Six months after disclosure: Similarities: 1. To know the news as early as possible 2. To resume normal lifestyle 3. Clarification to know what is going on with their health 4. Reassurance/relief 5. To plan ahead/to plan the future Newly mentioned advantages:/ Not mentioned after 6 months: 1. Enjoy life more 2. To accept memory complaints better |
“I have to live with that now [referring to symptoms]. That is not always easy, but I can accept it better now because it is not from dementia, so I can accept it better, and it is easier for me.” (61-year-old woman)
“Yes, it’s a relief.… There was a heavy burden, because you think, misery is about to happen and lots of suffering will come to you. Maybe that is over now. Well, you never know, but nobody knows that.” (68-year-old woman)
Six months after disclosure
Experienced disadvantages
Two weeks after disclosure
Patients with an amyloid-positive test result | Patients with an amyloid-negative test result |
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Two weeks after disclosure: 1. Emotional difficulties 2. Worse situation than initially expected 3. Patronized by partner/children 4. Question: Will my symptoms become any worse? If so, when? Six months after disclosure: Similarities: 1. Emotional difficulties 2. Question: Will my symptoms become any worse? If so, when? Newly mentioned disadvantages: 1. Driver’s license Not mentioned after 6 months: 1. Worse situation than initially expected 2. Patronized by partner/children | Two weeks after disclosure: 1. No access to all clinical trial data 2. Question: What is causing my memory complaints? Six months after disclosure: Similarities: 1. Question: What is causing my memory complaints? Newly mentioned disadvantages: 1. Wrong diagnosis? Not mentioned after 6 months: 1. No access to all clinical trial data |
“Yes, I hope for the best. It will definitely evolve. I don’t think it will stay like that, but is that within 5 years? Is that already next year? It’s possible that by next year I’m already completely from the map. Is it within 10 years if I’m still alive by that time? I don’t know. As far as I know, there is no fixed rule for that, I think.” (81-year-old man)
“Then I ask myself, there must be something different that they cannot find or where no research has yet been done.” (73-year-old man)“You are happy and still you think, damn, I forget so much. I would better be sick than not being sick.” (67-year-old man)
Six months after disclosure
“No, it’s always a faint chance that there’s something wrong, a false-negative or something, or maybe for some reason on that day you are better. There’s a faint chance that it could be a wrong diagnosis.” (66-year-old man)
Patient feedback on the trial
“So maybe you should talk to patients first and ask them what they would want to know and then design the study, if you understand what I mean.” (66-year-old man)