Table 3 Comparison of survey questions only for cases by disease groupa
Questions and answers | Disease Group | |||||
|---|---|---|---|---|---|---|
Total | T2DM | COPD | RA | HT | P value | |
(n = 604) | (n = 151) | (n = 151) | (n = 151) | (n = 151) | ||
Enrollment | ||||||
10. How were you invited to participate in your current or most recent research study? | ||||||
By a clinical researcher participating in the study. | 190 (31.5) | 43 (28.5) | 51 (33.8) | 76 (50.3) | 20 (13.2) | < 0.001 |
In the research physician’s private consult. | 120 (19.9) | 25 (16.6) | 36 (23.8) | 26 (17.2) | 33 (21.9) | |
A patient who participates in the research study invited me. | 115 (19) | 52 (34.4) | 18 (11.9) | 14 (9.3) | 31 (20.5) | |
Other media. | 65 (10.8) | 14 (9.3) | 14 (9.3) | 9 (6) | 28 (18.5) | |
In a disease detection campaign. | 45 (7.5) | 9 (6) | 12 (7.9) | 6 (4) | 18 (11.9) | |
In a private medical consult. | 39 (6.5) | 5 (3.3) | 9 (6) | 6 (4) | 19 (12.6) | |
Notice published at a hospital. | 16 (2.6) | 2 (1.3) | 5 (3.3) | 7 (4.6) | 2 (1.3) | |
Newspaper advertisement. | 13 (2.2) | 1 (0.7) | 5 (3.3) | 7 (4.6) | 0 (0) | |
Radio advertisement. | 1 (0.2) | 0 (0) | 1 (0.7) | 0 (0) | 0 (0) | |
Notice published online. | 0 (0) | 0 (0) | 0 (0) | 0 (0) | 0 (0) | |
Television advertisement. | 0 (0) | 0 (0) | 0 (0) | 0 (0) | 0 (0) | |
11. Why did you decided to participate in your current research study? | ||||||
Because this is the best way to get medical care. | 222 (36.8) | 54 (35.8) | 54 (35.8) | 56 (37.1) | 58 (38.4) | < 0.001 |
Because the physician’s care is more cautious. | 159 (26.3) | 52 (34.4) | 41 (27.2) | 31 (20.5) | 35 (23.2) | |
Because I have not responded to available treatments. | 112 (18.5) | 21 (13.9) | 15 (9.9) | 28 (18.5) | 48 (31.8) | |
Because my participation aids scientific medical progress. | 65 (10.8) | 11 (7.3) | 25 (16.6) | 22 (14.6) | 7 (4.6) | |
Because I have no other way to get clinical care. | 23 (3.8) | 5 (3.3) | 8 (5.3) | 10 (6.6) | 0 (0) | |
Because everything is free. | 19 (3.1) | 7 (4.6) | 7 (4.6) | 2 (1.3) | 3 (2) | |
Other reason. | 4 (0.7) | 1 (0.7) | 1 (0.7) | 2 (1.3) | 0 (0) | |
Informed Consent | ||||||
12. Have you fully read the informed consent letter required to accept enrolling in the research study? | ||||||
Yes | 546 (90.4) | 138 (91.4) | 137 (90.7) | 129 (85.4) | 142 (94) | 0.079 |
No | 58 (9.6) | 13 (8.6) | 14 (9.3) | 22 (14.6) | 9 (6) | |
13. Why did you not read the informed consent letter? | ||||||
Because I fully trust that my physician would not put my health at risk. | 33 (56.9) | 4 (30.8) | 9 (64.3) | 14 (63.6) | 6 (66.7) | 0.115 |
Because I did not have enough time to read it. | 11 (19) | 6 (46.2) | 2 (14.3) | 2 (9.1) | 1 (11.1) | |
Because the document was very long. | 8 (13.8) | 2 (15.4) | 3 (21.4) | 1 (4.5) | 2 (22.2) | |
Other reason. | 3 (5.2) | 1 (7.7) | 0 (0) | 2 (9.1) | 0 (0) | |
Because I did not understand it, the text was not clear. | 3 (5.2) | 0 (0) | 0 (0) | 3 (13.6) | 0 (0) | |
14. How much time did the research physician take to explain the research study’s process, risks and benefits, as well as your rights and obligations as a participant? | ||||||
More than 30 min. | 262 (43.4) | 56 (37.1) | 33 (21.9) | 64 (42.4) | 109 (72.2) | < 0.001 |
20 to 30 min. | 130 (21.5) | 50 (33.1) | 33 (21.9) | 25 (16.6) | 22 (14.6) | |
10 to 20 min. | 107 (17.7) | 27 (17.9) | 33 (21.9) | 35 (23.2) | 12 (7.9) | |
No more than 10 min. | 97 (16.1) | 17 (11.3) | 46 (30.5) | 26 (17.2) | 8 (5.3) | |
Less than 5 min. | 8 (1.3) | 1 (0.7) | 6 (4) | 1 (0.7) | 0 (0) | |
15. How satisfied are you with the explanation received about the research study’s process, risks and benefits, as well as the protection you have in case of an adverse reaction related to the experimental drug? | ||||||
Very satisfied. | 326 (54) | 81 (53.6) | 78 (51.7) | 70 (46.4) | 97 (64.2) | 0.043 |
Satisfied. | 249 (41.2) | 67 (44.4) | 63 (41.7) | 68 (45) | 51 (33.8) | |
Neither satisfied nor unsatisfied. | 20 (3.3) | 3 (2) | 6 (4) | 10 (6.6) | 1 (0.7) | |
Unsatisfied. | 7 (1.2) | 0 (0) | 3 (2) | 2 (1.3) | 2 (1.3) | |
Very unsatisfied. | 2 (0.3) | 0 (0) | 1 (0.7) | 1 (0.7) | 0 (0) | |
Cases’ experience participating in an industry-sponsored research trial | ||||||
16. How satisfied are you with your participation in this research study? | ||||||
Very satisfied. | 376 (62.3) | 90 (59.6) | 89 (58.9) | 83 (55) | 114 (75.5) | 0.009 |
Satisfied. | 215 (35.6) | 61 (40.4) | 58 (38.4) | 61 (40.4) | 35 (23.2) | |
Neither satisfied nor unsatisfied. | 6 (1) | 0 (0) | 1 (0.7) | 4 (2.6) | 1 (0.7) | |
Unsatisfied. | 3 (0.5) | 0 (0) | 1 (0.7) | 2 (1.3) | 0 (0) | |
Very unsatisfied. | 4 (0.7) | 0 (0) | 2 (1.3) | 1 (0.7) | 1 (0.7) | |
17. How satisfied are you with the time your research physician dedicates you? | ||||||
Very satisfied. | 413 (68.4) | 106 (70.2) | 94 (62.3) | 90 (59.6) | 123 (81.5) | 0.003 |
Satisfied. | 179 (29.6) | 44 (29.1) | 53 (35.1) | 57 (37.7) | 25 (16.6) | |
Neither satisfied nor unsatisfied. | 5 (0.8) | 1 (0.7) | 1 (0.7) | 2 (1.3) | 1 (0.7) | |
Unsatisfied. | 3 (0.5) | 0 (0) | 0 (0) | 1 (0.7) | 2 (1.3) | |
Very unsatisfied. | 4 (0.7) | 0 (0) | 3 (2) | 1 (0.7) | 0 (0) | |
18. How satisfied are you with your research physician’s sense of humanity? | ||||||
Very satisfied. | 466 (77.2) | 124 (82.1) | 113 (74.8) | 103 (68.2) | 126 (83.4) | 0.019 |
Satisfied. | 133 (22) | 27 (17.9) | 36 (23.8) | 47 (31.1) | 23 (15.2) | |
Neither satisfied nor unsatisfied. | 1 (0.2) | 0 (0) | 1 (0.7) | 0 (0) | 0 (0) | |
Unsatisfied. | 2 (0.3) | 0 (0) | 0 (0) | 0 (0) | 2 (1.3) | |
Very unsatisfied. | 2 (0.3) | 0 (0) | 1 (0.7) | 1 (0.7) | 0 (0) | |
19. How easy is to talk to your research physician? (Availability) | ||||||
Very easy. | 447 (74) | 114 (75.5) | 108 (71.5) | 97 (64.2) | 128 (84.8) | 0.021 |
Easy. | 143 (23.7) | 36 (23.8) | 37 (24.5) | 49 (32.5) | 21 (13.9) | |
Neither easy nor difficult. | 10 (1.7) | 1 (0.7) | 5 (3.3) | 3 (2) | 1 (0.7) | |
Difficult. | 2 (0.3) | 0 (0) | 0 (0) | 1 (0.7) | 1 (0.7) | |
Very difficult. | 2 (0.3) | 0 (0) | 1 (0.7) | 1 (0.7) | 0 (0) | |
20. How satisfied are you when talking to the research physician? | ||||||
Very satisfied. | 457 (75.7) | 117 (77.5) | 105 (69.5) | 106 (70.2) | 129 (85.4) | 0.019 |
Satisfied. | 136 (22.5) | 34 (22.5) | 40 (26.5) | 41 (27.2) | 21 (13.9) | |
Neither satisfied nor unsatisfied. | 5 (0.8) | 0 (0) | 2 (1.3) | 3 (2) | 0 (0) | |
Very unsatisfied. | 4 (0.7) | 0 (0) | 3 (2) | 1 (0.7) | 0 (0) | |
Unsatisfied. | 2 (0.3) | 0 (0) | 1 (0.7) | 0 (0) | 1 (0.7) | |
21. How satisfied are you with the results obtained regarding the research medical care of your disease? | ||||||
Very satisfied. | 444 (73.5) | 110 (72.8) | 104 (68.9) | 103 (68.2) | 127 (84.1) | 0.055 |
Satisfied. | 144 (23.8) | 36 (23.8) | 41 (27.2) | 43 (28.5) | 24 (15.9) | |
Neither satisfied nor unsatisfied. | 12 (2) | 5 (3.3) | 4 (2.6) | 3 (2) | 0 (0) | |
Very unsatisfied. | 3 (0.5) | 0 (0) | 2 (1.3) | 1 (0.7) | 0 (0) | |
Unsatisfied. | 1 (0.2) | 0 (0) | 0 (0) | 1 (0.7) | 0 (0) | |