Table 2 Anticipated reactions to AD biomarker disclosure
From: Anticipated reactions to learning Alzheimer’s disease biomarker results
Item | Not at all [1] N (%) | A little [2] N (%) | Somewhat [3] N (%) | Very [4] N (%) | Extremely [5] N (%) | Mean (SD) |
|---|---|---|---|---|---|---|
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 | ||||||
To know more about your risk of developing Alzheimer’s | 18 (5.4) | 27 (8.2) | 55 (16.6) | 91 (27.5) | 140 (42.3) | 3.93 (1.2) |
To inform lifestyle changes you might make, such as diet or exercise that might help prevent Alzheimer’s | 9 (2.7) | 10 (3.0) | 38 (11.4) | 105 (31.4) | 172 (51.5) | 4.26 (1.0) |
To put your mind at ease if you found out your brain marker results did not indicate a higher risk for developing Alzheimer’s | 15 (4.5) | 11 (3.3) | 41 (12.3) | 115 (34.4) | 152 (45.5) | 4.13 (1.0) |
To be able to participate in clinical trials attempting to lower brain marker results | 13 (3.9) | 16 (4.8) | 68 (20.5) | 126 (38.0) | 109 (32.8) | 3.91 (1.0) |
To arrange your personal affairs, such as insurance, your will, or your finances | 32 (9.6) | 21 (6.3) | 69 (20.7) | 94 (28.1) | 118 (35.3) | 3.73 (1.3) |
To confirm the feeling that you might already be developing symptoms of Alzheimer’s | 28 (8.4) | 24 (7.2) | 61 (18.3) | 105 (31.5) | 115 (34.5) | 3.77 (1.2) |
To prepare your family for your possible illness in the future | 18 (5.4) | 16 (4.8) | 54 (16.2) | 108 (32.3) | 138 (41.3) | 3.99 (1.1) |
A desire to start doing things sooner than you had planned | 24 (7.2) | 21 (6.3) | 65 (19.5) | 121 (36.2) | 103 (30.8) | 3.77 (1.2) |
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. 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? | 25 (7.5) | 50 (15) | 125 (37.5) | 82 (24.6) | 51 (15.3) | 3.25 (1.1) |
How sad would you feel about your results? | 12 (3.6) | 50 (15) | 125 (37.5) | 87 (26.1) | 59 (17.7) | 3.39 (1.1) |
How anxious or nervous would you feel about your results? | 28 (8.4) | 49 (14.7) | 126 (37.8) | 88 (26.4) | 42 (12.6) | 3.20 (1.1) |
How relieved would you feel about your results? | 96 (29.1) | 43 (13.0) | 83 (25.2) | 72 (21.8) | 36 (10.9) | 2.72 (1.4) |
How happy would you feel about your results? | 202 (61.2) | 27 (8.2) | 47 (14.2) | 30 (9.1) | 24 (7.3) | 1.93 (1.3) |
How worried would you be about your risk of developing Alzheimer’s? | 18 (5.4) | 49 (14.7) | 120 (35.9) | 94 (28.1) | 53 (15.9) | 3.34 (1.1) |
How uncertain would you be about what your results mean about your risk of developing Alzheimer’s? | 31 (9.3) | 49 (14.8) | 156 (47.0) | 76 (22.9) | 20 (6.0) | 3.02 (1.0) |
How uncertain would you be about what your results mean for your children or family’s risk of Alzheimer’s? | 31 (9.3) | 34 (10.2) | 105 (31.6) | 108 (32.5) | 54 (16.3) | 3.36 (1.2) |
How frustrated would you feel about there being no definite Alzheimer’s prevention guidelines for you? | 40 (12.0) | 56 (16.8) | 90 (27.0) | 89 (26.7) | 58 (17.4) | 3.21 (1.3) |
How hopeless would you feel about the future? | 89 (26.6) | 73 (21.9) | 112 (33.5) | 39 (11.7) | 21 (6.3) | 2.49 (1.2) |
How concerned would you feel about how your results might affect your insurance status? | 81 (24.3) | 29 (8.7) | 92 (27.7) | 79 (23.8) | 51 (15.4) | 2.97 (1.4) |
How concerned would you feel about the possibility that your doctor might learn the results and treat you differently? | 145 (43.5) | 49 (14.7) | 65 (19.5) | 46 (13.8) | 28 (8.4) | 2.29 (1.4) |
How concerned would you be that if others, such as family, friends, or co-workers, learned the results, they would act differently toward you? | 87 (26.0) | 57 (17.1) | 107 (32.0) | 55 (16.5) | 28 (8.4) | 2.64 (1.3) |
How likely would you be to tell a loved one your results? | 11 (3.3) | 16 (4.8) | 44 (13.2) | 130 (38.9) | 133 (39.8) | 4.07 (1.0) |
How difficult would it be to talk about your results with family members? | 142 (42.6) | 57 (17.1) | 80 (24.0) | 44 (13.2) | 10 (3.0) | 2.17 (1.2) |
How supportive do you feel that your family would be? | 2 (0.6) | 4 (1.2) | 23 (6.9) | 138 (41.6) | 165 (49.7) | 4.39 (0.7) |
How likely is it that you would feel a loss of personal control? | 38 (11.4) | 49 (14.8) | 117 (35.2) | 80 (24.1) | 48 (14.5) | 3.15 (1.2) |
How likely is it that you would have problems enjoying life because of your results? | 104 (31.1) | 77 (23.1) | 96 (28.8) | 38 (11.4) | 18 (5.4) | 2.37 (1.2) |
How likely is it that you would regret getting your results? | 169 (50.8) | 54 (16.2) | 66 (19.8) | 34 (10.2) | 10 (3.0) | 1.98 (1.2) |
How likely is it that you would feel bad about yourself, or that you are a failure or have let yourself or your family down? | 242 (72.9) | 52 (15.7) | 21 (6.3) | 9 (2.7) | 8 (2.4) | 1.46 (0.9) |
How likely is it that you would have thoughts that you would be better off dead or consider hurting yourself in some way? | 272 (82.2) | 30 (9.1) | 17 (5.1) | 5 (1.5) | 7 (2.1) | 1.32 (0.8) |
How likely is it that you would seek mental health services? | 56 (16.9) | 53 (16.0) | 84 (25.3) | 84 (25.3) | 55 (16.6) | 3.09 (1.3) |
How likely is it that you would have more trouble concentrating on things, such as reading the newspaper or watching television? | 124 (37.5) | 66 (19.9) | 96 (29.0) | 30 (9.1) | 15 (4.5) | 2.23 (1.2) |
How likely is it that you would have more trouble remembering things, such as recent conversations or events? | 116 (35.2) | 61 (18.5) | 91 (27.2) | 41 (12.4) | 21 (6.4) | 2.36 (1.3) |
How likely is it that you would be less confident about your ability to carry out daily activities? | 99 (29.6) | 71 (21.3) | 120 (35.9) | 30 (9.0) | 14 (4.2) | 2.37 (1.1) |
How likely is it that you would view the length of time you have to live differently? | 56 (16.8) | 33 (9.9) | 89 (26.7) | 97 (29.1) | 58 (17.4) | 3.20 (1.3) |
How likely would you be to make changes to your diet? | 12 (3.6) | 13 (3.9) | 43 (12.9) | 12 (38.0) | 139 (41.6) | 4.10 (1.0) |
How likely would you be to exercise or do more physical activity? | 15 (4.5) | 19 (5.8) | 36 (10.9) | 130 (39.4) | 130 (39.4) | 4.03 (1.1) |
How likely would you be to make changes to your medications? | 38 (11.6) | 18 (5.5) | 67 (20.4) | 105 (31.9) | 101 (30.7) | 3.65 (1.3) |
How likely would you be to make changes to or start taking vitamins or herbal supplements? | 41 (12.3) | 17 (5.1) | 60 (18.0) | 117 (35.1) | 98 (29.4) | 3.64 (1.3) |
How likely would you be to engage in activities to reduce stress? | 14 (4.2) | 17 (5.1) | 40 (12.0) | 147 (44.0) | 116 (34.7) | 4.00 (1.0) |
How likely would you be to engage in mental or cognitive activities such as crossword puzzles or Sudoku? | 13 (3.9) | 14 (4.2) | 35 (10.5) | 147 (44.0) | 125 (37.4) | 4.07 (1.0) |
How likely would you be to reduce or eliminate alcohol intake? | 34 (11.3) | 13 (4.3) | 49 (16.2) | 102 (33.8) | 104 (34.4) | 3.76 (1.3) |