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Table 5 Response to statements about the genetic counselling experience as part of the PC screening program

From: Genetic counselling and personalised risk assessment in the Australian pancreatic cancer 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)
  1. aThe most frequent response is shown in bold