Table 3.
Exposure to Genetic Counseling and Proportion of Correct Responses on True/False Items (Mann-Whitney U test)
| Exposure to Genetic Counseling | ||||
|---|---|---|---|---|
| Any (N = 132) | None (N = 43) | |||
| % Correct Mean (SD) |
% Correct Mean (SD) |
Zadj | p | |
| 1. Batten disease occurs in approximately 1 out of 1,000 people in the U.S. | 80 (40) | 81 (40) | 0.09 | 0.93 |
| 2. Vision loss is always the first symptom to develop in Batten disease. | 79 (41) | 72 (45) | 0.90 | 0.37 |
| 3. Batten disease symptoms are linked to the buildup of lipopigments in the body’s tissues. | 71 (45) | 81 (40) | 1.24 | 0.21 |
| 4. Stem cell transplants are an experimental, unproven treatment for Batten disease. | 89 (32) | 84 (37) | 0.84 | 0.40 |
| 5. Batten disease can be slowed down with “natural” treatments such as diet, exercise, and over-the-counter herbal remedies. | 88 (33) | 84 (37) | 0.70 | 0.49 |
| 81 (19) | 80 (20) | |||
| Medical knowledge of Batten disease (Items #1–5) | Median = 80 | Median = 80 | 0.58 | 0.58 |
| Range: 20–100 | Range: 40–100 | |||
| 6. A gene is composed of a group of proteins. | 32 (47) | 30 (46) | 0.19 | 0.85 |
| 7. It is possible to have an abnormal gene without having symptoms of disease. | 96 (19) | 81 (39) | 3.20 | <0.01 |
| 8. Genetic diseases always begin in childhood. | 93 (25) | 84 (37) | 1.86 | 0.06 |
| 9. Genes are found in nerve cells but not egg and sperm cells. | 81 (39) | 65 (48) | 2.15 | <0.05 |
| 76 (19) | 65 (27) | |||
| Median = 75 | Median = 75 | 2.03 | <0.05 | |
| Range: 25–100 | Range: 0–100 | |||
| 10. All people affected with Batten disease have a mutation in the same gene. | 77 (43) | 63 (49) | 1.76 | 0.079 |
| 11. Someone with one copy of a Batten gene mutation will not develop Batten disease. | 85 (36) | 77 (43) | 1.22 | 0.22 |
| 12. When someone has Batten disease, his or her siblings have a 1 in 4 chance of also developing Batten disease. | 95 (21) | 86 (35) | 2.09 | <0.05 |
| 13. The function of the proteins encoded by the Batten gene or genes is well understood at this point in time. | 84 (37) | 72 (45) | 1.72 | 0.09 |
| 14. Girls and boys equally likely to get Batten disease. | 92 (27) | 77 (43) | 2.80 | <0.01 |
| 15. A Batten gene that is normal during a person’s childhood can develop a mutation as the person ages. | 72 (45) | 56 (50) | 1.96 | <0.05 |
| 84 (18) | 72 (26) | |||
| Genetic knowledge of Batten disease (Items #10–15) | Median = 83 | Median = 83 | 2.79 | <0.01 |
| Range: 33–100 | Range: 0–100 | |||
| 81 (14) | 73 (19) | |||
| Total (all items) | Median = 87 | Median = 80 | 2.60 | <0.01 |
| Range: 33–100 | Range: 13–100 | |||