Table 6 Anticipated reactions to AD biomarker disclosure scale
From: Anticipated reactions to learning Alzheimer’s disease biomarker results
Behavior change | |
|---|---|
Prompt: I’m going to tell you some reasons why someone might want to learn their brain marker results. Please rate how important each of these are to you, as a reason to learn your brain marker results | |
Planninga | |
1.To know more about your risk of developing Alzheimer’s. How important would this be to you as a reason to learn your brain marker results? | < 1 > Not at all < 2 > A little < 3 > Somewhat < 4 > Very < 5 > Extremely |
2.To inform lifestyle changes you might make, such as diet or exercise, that might help prevent Alzheimer’s. How important would this be to you (as a reason to learn your brain marker results)? | < 1 > Not at all < 2 > A little < 3 > Somewhat < 4 > Very < 5 > Extremely |
3.To put your mind at ease if you found out your brain marker results did not indicate a higher risk for developing Alzheimer’s. How important would this be to you? | < 1 > Not at all < 2 > A little < 3 > Somewhat < 4 > Very < 5 > Extremely |
4.To be able to participate in clinical trials attempting to lower brain marker results. How important would this be to you? | < 1 > Not at all < 2 > A little < 3 > Somewhat < 4 > Very < 5 > Extremely |
5.To arrange your personal affairs, such as insurance, your will, or your finances. How important would this be to you? | < 1 > Not at all < 2 > A little < 3 > Somewhat < 4 > Very < 5 > Extremely |
6.To confirm the feeling that you might already be developing symptoms of Alzheimer’s. How important would this be to you? | < 1 > Not at all < 2 > A little < 3 > Somewhat < 4 > Very < 5 > EXtremely |
7.To prepare your family for your possible illness in the future. How important would this be to you? | < 1 > Not at all < 2 > A little < 3 > Somewhat < 4 > Very < 5 > Extremely |
8.A desire to start doing things sooner than you had planned. How important would this be to you? | < 1 > Not at all < 2 > A little < 3 > Somewhat < 4 > Very < 5 > Extremely |
Prompt: I want you to imagine that you participated in a study and were told that your brain marker results were high. While these results do not necessarily mean you will develop Alzheimer’s, it means you have a higher risk of developing Alzheimer’s | |
Risk-reduction | |
9.If you learned that your brain marker results were high and you were at higher risk of developing Alzheimer’s, how likely would you be to make changes in the following areas specifically to lower your risk of Alzheimer’s? How likely would you be to make changes to your diet? | < 1 > Not at all < 2 > A little < 3 > Somewhat < 4 > Very < 5 > Extremely |
10.(If you learned that your brain marker results were high and you were at higher risk of developing Alzheimer’s) How likely would you be to exercise or do more physical activity? | < 1 > Not at all < 2 > A little < 3 > Somewhat < 4 > Very < 5 > Extremely |
11.(If you learned that your brain marker results were high and you were at higher risk of developing Alzheimer’s) How likely would you be to make changes to your medications? | < 1 > Not at all < 2 > A little < 3 > Somewhat < 4 > Very < 5 > Extremely |
12.(If you learned that your brain marker results were high and you were at higher risk of developing Alzheimer’s) How likely would you be to make changes to or start taking vitamins or herbal supplements? | < 1 > Not at all < 2 > A little < 3 > Somewhat < 4 > Very < 5 > Extremely |
13.(If you learned that your brain marker results were high and you were at higher risk of developing Alzheimer’s) How likely would you be to engage in activities to reduce stress? | < 1 > Not at all < 2 > A little < 3 > Somewhat < 4 > Very < 5 > Extremely |
14.(If you learned that your brain marker results were high and you were at higher risk of developing Alzheimer’s) How likely would you be to engage in mental or cognitive activities such as crossword puzzles or Sudoku? | < 1 > Not at all < 2 > A little < 3 > Somewhat < 4 > Very < 5 > Extremely |
Psychological impact | |
Distress | |
15.If you learned that your brain marker results were high and you were at higher risk of developing Alzheimer’s how upset would you feel about your results? | < 1 > Not at all < 2 > A little < 3 > Somewhat < 4 > Very < 5 > Extremely |
16.(If you learned that your brain marker results were high and you were at higher risk of developing Alzheimer’s) How sad would you feel about your results? | < 1 > Not at all < 2 > A little < 3 > Somewhat < 4 > Very < 5 > Extremely |
17.(If you learned that your brain marker results were high and you were at higher risk of developing Alzheimer’s) How anxious or nervous would you feel about your results? | < 1 > Not at all < 2 > A little < 3 > Somewhat < 4 > Very < 5 > Extremely |
18.(If you learned that your brain marker results were high and you were at higher risk of developing Alzheimer’s) How worried would you be about your risk of developing Alzheimer’s? | < 1 > Not at all < 2 > A little < 3 > Somewhat < 4 > Very < 5 > Extremely |
19.(If you learned that your brain marker results were high and you were at higher risk of developing Alzheimer’s) How uncertain would you be about what your results mean about your risk of developing Alzheimer’s? | < 1 > Not at all < 2 > A little < 3 > Somewhat < 4 > Very < 5 > Extremely |
20.(If you learned that your brain marker results were high and you were at higher risk of developing Alzheimer’s) How uncertain would you be about what your results mean for your children or family’s risk of Alzheimer’s? | < 1 > Not at all < 2 > A little < 3 > Somewhat < 4 > Very < 5 > Extremely |
21.(If you learned that your brain marker results were high and you were at higher risk of developing Alzheimer’s) How frustrated would you feel about there being no definite Alzheimer’s prevention guidelines for you? | < 1 > Not at all < 2 > A little < 3 > Somewhat < 4 > Very < 5 > Extremely |
22.(If you learned that your brain marker results were high and you were at higher risk of developing Alzheimer’s) How hopeless would you feel about the future? | < 1 > Not at all < 2 > A little < 3 > Somewhat < 4 > Very < 5 > Extremely |
Stigma | |
23.(If you learned that your brain marker results were high and you were at higher risk of developing Alzheimer’s) How concerned would you feel about how your results might affect your insurance status? | < 1 > Not at all < 2 > A little < 3 > Somewhat < 4 > Very < 5 > Extremely |
24.(If you learned that your brain marker results were high and you were at higher risk of developing Alzheimer’s) How concerned would you feel about the possibility that your doctor might learn the results and treat you differently? | < 1 > Not at all < 2 > A little < 3 > Somewhat < 4 > Very < 5 > Extremely |
25.(If you learned that your brain marker results were high and you were at higher risk of developing Alzheimer’s) How concerned would you be that if others, such as family, friends, or co-workers, learned the results, they would act differently toward you? | < 1 > Not at all < 2 > A little < 3 > Somewhat < 4 > Very < 5 > Extremely |
Subjective cognitive complaints | |
26.(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 have more trouble concentrating on things, such as reading the newspaper or watching television? | < 1 > Not at all < 2 > A little < 3 > Somewhat < 4 > Very < 5 > Extremely |
27.(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 have more trouble remembering things, such as recent conversations or events? | < 1 > Not at all < 2 > A little < 3 > Somewhat < 4 > Very < 5 > Extremely |
28.(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 |