Table 2.
Assessing the impact of recontact and disclosure (n = 10 participants)
| 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%) | – |
Data Presented as mean (SD) for continuous data, n (%) for categorical data, and range
FACToR Scale Feelings About genomiC Testing Result
aIndicates the percent answered correctly for the 5 comprehension questions (total 41, out of 50)
bMeasured on a scaled from 0 to 5 with 5 being very satisfied or strongly agree
cMeasured on a scale from 0 to 100 with 100 being high psychological distress or high decisional regret
dParticipants were allowed to select more than one answer for Information Sharing