Table 3.
Adapted Ideal Patient Autonomy Scale
| Item (with original item numbers) | (Strongly) Agree | Neither agree or disagree | (Strongly) Disagree | |||
|---|---|---|---|---|---|---|
| n | % | n | % | n | % | |
| Scale: Doctors knows best (α = 0.61) | ||||||
| 2. It is better that the healthcare provider rather than the patient decides about genetic testing | 0 | 0 | 3 | 7 | 41 | 93 |
| 5. During the conversation, the patient must entrust him/herself to the expertise of the healthcare provider | 24 | 55 | 13 | 30 | 7 | 16 |
| 9. If the healthcare provider and the patient cannot agree on whether or not to undergo genetic testing, the healthcare provider should make the final decision | 0 | 0 | 3 | 7 | 41 | 93 |
| 10. The patient should, without much information on the consequences, confidently undergo genetic testing | 2 | 5 | 4 | 9 | 38 | 86 |
| 12. The healthcare provider can presume that the patient knows the consequences of receiving a genetic test result | 1 | 2 | 6 | 14 | 37 | 84 |
| Scale: Patient should decide (α = 0.45) | ||||||
| 6. The patient must choose between whether to undergo genetic testing or not | 39 | 89 | 1 | 2 | 4 | 9 |
| 11. It would be taking things too far when the healthcare provider would decide for the patient | 38 | 86 | 3 | 7 | 3 | 7 |
| 14. As it concerns the body and life of the patient, the patient should make decisions about genetic testing | 41 | 93 | 2 | 5 | 1 | 2 |
| Scale: Right to non-participation (α = 0.42) | ||||||
| 4. Patients should have the right not to be involved in the decision about genetic testing | 13 | 30 | 7 | 16 | 24 | 55 |
| 8. Patients who become afraid when deciding about genetic testing should be left in peace by the healthcare provider | 14 | 32 | 14 | 32 | 16 | 36 |
| 13. If a patient chooses not to know anything about their genetic risk, the healthcare provider should respect this | 37 | 84 | 2 | 5 | 5 | 11 |
| Items not included in a subscale | ||||||
| 1. It is my responsibility to help a patient make a decision about genetic testinga | 30 | 68 | 7 | 16 | 7 | 16 |
| 3. If a healthcare provider and patient properly consult with each other, it does not matter who makes the final decision about genetic testing | 9 | 20 | 3 | 7 | 32 | 73 |
| 7. Before a patient consents to genetic testing she/he should receive all information on the consequences of the test result | 41 | 93 | 1 | 2 | 2 | 5 |
aItem 1 is self-developed (see Table 1)