Per-person comprehension of resultsa (% answered correctly) | 82% (26%) | 20–100% |
Name of participant’s condition | 8 (80%) | – |
Name of gene associated with condition | 9 (90%) | – |
Type of inheritance pattern | 6 (60%) | – |
Inheritance risk to biological siblings | 9 (90%) | – |
Inheritance risk to children | 9 (90%) | – |
Letter satisfactionb | 4.2 (0.7) | 3.0–5.0 |
Information about research pathogenic variant | 4.1 (0.8) | 3.0–5.0 |
Family member implications | 4.4 (0.5) | 4.0–5.0 |
Resources provided | 4.1 (0.8) | 3.0–5.0 |
Letter length | 4.2 (0.7) | 3.0–5.0 |
Readability of letter | 4.1 (0.8) | 3.0–5.0 |
Genetic counseling satisfactionb | 4.4 (0.4) | 3.3–5.0 |
Empathy demonstrated | 4.7 (0.7) | 3.0–5.0 |
Facilitated the decision-making process | 4.7 (0.5) | 4.0–5.0 |
Reassured | 3.7 (0.8) | 2.0–5.0 |
Appointment duration | 4.0 (0.7) | 3.0–5.0 |
Concern demonstrated | 4.7 (0.5) | 4.0–5.0 |
Appointment was valuable | 4.5 (0.7) | 3.0–5.0 |
Psychological response (FACToR score) | ||
Psychological distressc | 16.0 (4.2) | 7.0–21.0 |
Negative feelings | 3.7 ± 3.4 | 0.0–12.0 |
Uncertainty | 2.0 ± 1.7 | 0.0–5.0 |
Privacy concerns | 1.7 ± 2.0 | 0.0–5.0 |
Positive feelings | 8.7 ± 3.8 | 0.0–12.0 |
Decisional satisfaction and regret | ||
Regretc | 11.5 (11.6) | 0.0–25.0 |
Information sharingd | 9 (90%) | – |
Spouse or partner | 4 (40%) | – |
Children | 4 (40%) | – |
Siblings | 4 (40%) | – |
Physician/cardiologist | 3 (30%) | – |
Parents | 2 (20%) | – |
Other (i.e., relatives, friends, etc.) | 3 (30%) | – |