Table 5.
Response to statements about the genetic counselling experience as part of the PC screening program
| Statement | Strongly agree n (%) | Partially agree n (%) | Neutral n (%) | Partially disagree n (%) | Strongly disagree n (%) | Total n (%) |
|---|---|---|---|---|---|---|
| I knew beforehand that I would receive genetic counselling as part of my research visit | 65 (75.6) | 11 (12.8) | 8 (9.3) | 1 (1.2) | 1 (1.2) | 86 (100) |
| Before genetic counselling, I had already read or heard a fair amount about hereditary pancreas cancer | 36 (41.9) | 30 (34.9) | 9 (10.5) | 6 (7.0) | 5 (5.8) | 86 (100) |
| The genetic counselling session was helpful to me | 46 (54.1) | 21 (24.7) | 10 (11.8) | 4 (4.7) | 4 (4.7) | 85 (100) |
| I would have preferred to have only the endoscopy procedure and not genetic counselling | 8 (9.4) | 4 (4.7) | 23 (27.1) | 8 (9.4) | 42 (49.4) | 85 (100) |
| I would have preferred more information about hereditary pancreas cancer | 12 (13.8) | 21 (24.1) | 31 (35.6) | 8 (9.2) | 15 (17.2) | 87 (100) |
| Scientists do not currently know enough about hereditary pancreas cancer to help me | 11 (12.6) | 22 (25.3) | 32 (36.8) | 14 (16.1) | 8 (9.2) | 87 (100) |
| I would recommend genetic counselling for pancreas cancer to a friend or relative with a family history of pancreas cancer | 65 (76.5) | 10 (11.8) | 6 (7.1) | 1 (1.2) | 3 (3.5) | 85 (100) |
| The genetic information was too complex | 1 (1.2) | 7 (8.4) | 23 (27.7) | 18 (21.7) | 34 (41.0) | 83 (100) |
| The written summary of the visit was useful | 36 (48.6) | 17 (23.0) | 16 (21.6) | 0 (0) | 5 (6.8) | 74 (100) |
| I will share the written summary with my family members | 46 (63.0) | 12 (16.4) | 8 (11.0) | 3 (4.1) | 4 (5.5) | 73 (100) |
| I think genetic counselling for pancreas cancer is helpful, even if the “pancreas cancer gene” has not been found | 55 (66.3) | 15 (18.1) | 10 (12.0) | 1 (1.2) | 2 (2.4) | 83 (100) |
| If the “pancreas cancer gene” were found, I would want to be tested for it | 78 (88.6) | 6 (6.8) | 3 (3.4) | 0 (0) | 1 (1.1) | 88 (100) |
| I do not think genetic counselling should be offered for pancreas cancer until the “pancreas cancer gene” has been found | 3 (3.5) | 2 (2.3) | 14 (16.3) | 15 (17.4) | 52 (60.5) | 86 (100) |
| I would be interested in another genetic counselling session when more information is learned about pancreas cancer | 58 (68.2) | 18 (21.2) | 5 (5.9) | 1 (1.2) | 3 (3.5) | 85 (100) |
| I think that the pancreas cancer in my family is caused by a gene mutation | 37 (43.0) | 13 (15.1) | 34 (39.5) | 1 (1.2) | 1 (1.2) | 86 (100) |
| I think I inherited a gene mutation that causes pancreas cancer | 23 (27.7) | 11 (13.3) | 45 (54.2) | 2 (2.4) | 2 (2.4) | 83 (100) |
| (for participants who have NOT previously had genetic testing related to pancreas cancer): Even though the “pancreas cancer gene” has not been found, I still want to get genetic testing for one or more of the syndromes discussed during genetic counselling | 28 (70.0) | 4 (10.0) | 6 (15.0) | 1 (2.5) | 1 (2.5) | 40 (100) |
| (for participants who HAVE previously had genetic testing related to pancreas cancer): I am glad that I had genetic testing for cancer risk for one or more of the syndromes discussed during genetic counselling | 44 (83.0) | 4 (7.5) | 5 (9.4) | 0 (0) | 0 (0) | 53 (100) |
| I do not feel that current genetic testing is likely to help me | 5 (6.1) | 3 (3.7) | 20 (24.4) | 9 (11.0) | 45 (54.9) | 82 (100) |
aThe most frequent response is shown in bold