Table 2.
Patient feedback on telephone predisclosure genetic counseling and disclosure of genetic research results with a genetic counselor
| Pre‐disclosure telephone counseling with a genetic counselor | |
| What did you like about your genetic counseling session? ((n = 74)a | N (%) |
| Liked the genetic counselor (GC) | 42 (57) |
| GC was GC was kind/professional/caring | 27 |
| GC was knowledgeable/informative | 17 |
| GC answered my questions | 10 |
| GC was easy to talk to/interactive/one‐on‐one conversation | 9 |
| GC helped me manage my expectations | 1 |
| Session was informative/learned something new | 39 (53) |
| Was able to ask questions/review information | 7 (9) |
| The visual aids were helpful | 6 (8) |
| Session was convenient | 5 (7) |
| Session was the right pace/length | 3 (4) |
| Chance to help others | 1 (1) |
| Session was personal | 1 (1) |
| My family could listen and ask questions | 1 (1) |
| What did you dislike about your genetic counseling session? (n = 70)b | |
| Nothing | 52 (74) |
| Stressful: in general or specific to facing cancer, potentially getting a positive result or considering how to share with children | 6 (9) |
| Information was too repetitive | 3 (4) |
| A lot of information | 2 (3) |
| Length | 1 (1) |
| Made me realize getting my results would be cumbersome | 1 (1) |
| If they find I have mutation, info might not be helpful | 1 (1) |
| Might have preferred in‐person | 1 (1) |
| Confusing terminology | 1 (1) |
| Wished I’d had visual aids during session | 1 (1) |
| Is there anything you'd change about your genetic counseling session? (n = 68)c | |
| No/nothing | 58 (85) |
| Shorter/simpler | 2 (3) |
| Wish I could have gotten my results at the time/in first session | 2 (3) |
| Wish I’d had visual aids during the session | 2 (3) |
| Visual aids | 1 (1) |
| Space where I took call was not private enough | 1 (1) |
| Would have liked a written list of frequently asked questions to return to later | 1 (1) |
| Would have preferred in‐person session | 1 (1) |
| Telephone disclosure of genetic research results with a genetic counselor | |
| What did you like about genetic counseling session? (n = 67)d | N (%) |
| Liked the genetic counselor (GC) | 25 (37) |
| GC was GC was kind/professional/caring | 16 |
| GC was knowledgeable/informative | 8 |
| GC answered my questions | 4 |
| GC easy to talk to/interactive/one‐on‐one conversation | 4 |
| Session was informative/learned something new | 24 (36) |
| Session was the right pace/length | 8 (12) |
| Was able to ask questions/review information | 6 (9) |
| Session was convenient/easy | 5 (7) |
| GC told me my results early in session/discuss results right away | 5 (7) |
| Happy with my results | 5 (7) |
| Getting my results gave me peace of mind | 3 (4) |
| Results were explained in a way personalized to me and my family | 2 (3) |
| Session was reassuring | 1 (1) |
| Gave me another opportunity to discuss my results | 1 (1) |
| Important to be able to talk about next steps, especially if actionable | 1 (1) |
| What did you dislike about genetic counseling session? (n = 62)e | |
| Nothing | 48 (78) |
| Stressful in general or in facing cancer or getting a positive results | 3 (5) |
| Information was too repetitive | 3 (5) |
| Length | 2 (3) |
| Did not like my result | 2 (3) |
| Raised new questions for me that I don't know how to answer | 2 (3) |
| Wished I’d had visual aids during session | 1 (2) |
| A lot of information | 1 (2) |
| Inconvenient | 1 (2) |
| Would have preferred to get results during the first visit | 1 (2) |
| Is there anything you'd change about your genetic counseling session? (n = 65)f | |
| No/nothing | 58 (89) |
| Wait caused anxiety | 2 (3) |
| Shorter/simpler | 1 (2) |
| Wish I’d had visual aids with me | 1 (2) |
| Wish I could have gotten my results at the time/in first session | 1 (2) |
| Didn't like that I needed further testing | 1 (2) |
| Wish I had been better prepared to ask questions | 1 (2) |
a
10 did not answer this question.
b
14 did not answer this question.
c
16 did not answer this question.
d
6 did not answer this question.
e
11 did not answer this question.
f
8 did not answer this question.