Table 3.
Barriers and enablers to participation in a hypothetical trial of a new treatment for breast cancer (N = 210) N (%).
| Statement | Perceived as Barrier | Perceived as Enabler | |||
|---|---|---|---|---|---|
| A Lot | A Little | No Effect | A Little | A Lot | |
| Social Influences | |||||
| If the investigators provided regular study updates |
1 (0.5%) | 0 (0%) | 10 (4.9%) | 89 (43.2%) | 106 (51.5%) |
| If my physician (s) thought I should participate | 0 (0%) | 0 (0%) | 13 (6.3%) | 76 (37.1%) | 116 (56.6%) |
| If there were helpful people on hand to help you make your participation decision |
0 (0%) | 2 (1.0%) | 17 (8.2%) | 96 (46.4%) | 92 (44.4%) |
| If my family thought I should participate | 0 (0%) | 1 (0.5%) | 39 (19.1) | 100 (49.0%) | 64 (31.4%) |
| If my physician was paid to recruit patients into the study |
122 (59.5%) | 41 (20.0%) | 38 (18.5%) | 3 (1.5%) | 1 (0.5%) |
| My feelings about whether the trial funders can be trusted | 23 (11.3%) | 31 (15.2%) | 46 (22.5%) | 46 (22.5%) | 58 (28.4%) |
| My worry that participation would mean that others would find out about my condition | 8 (3.9%) | 9 (4.4%) | 175 (85.4%) | 9 (4.4%) | 4 (2.0%) |
| Belief about Consequences | |||||
| My hope that participation will help me with my condition | 0 (0%) | 0 (0%) | 3 (1.5%) | 33 (16.1%) | 169 (82.4%) |
| My belief that participating would help others | 0 (0%) | 0 (0%) | 5 (2.5%) | 85 (41.9%) | 113 (55.7%) |
| My belief that participating would contribute to science | 0 (0%) | 0 (0%) | 13 (6.3%) | 104 (50.0%) | 91 (43.8%) |
| My belief that I would receive better care if I participated |
1 (0.5%) | 0 (0%) | 31 (14.9%) | 101 (48.6%) | 75 (36.1%) |
| If I had to stay longer in hospital | 40 (19.5%) | 78 (38.0%) | 78 (38.0%) | 5 (2.4%) | 4 (2.0%) |
| If I had to have more biopsies | 28 (13.8%) | 63 (31.0%) | 99 (48.8%) | 5 (2.5%) | 8 (3.9%) |
| If I had to have more blood tests | 9 (4.4%) | 32 (15.7%) | 147 (72.1%) | 9 (4.4%) | 7 (3.4%) |
| Belief about Capabilities | |||||
| If I think my cancer prognosis is poor | 13 (6.2%) | 6 (2.9%) | 17 (8.1%) | 52 (24.9%) | 121 (57.9%) |
| My belief that participating would give me a sense of control over what is happening to me | 0 (0%) | 4 (2.0%) | 28 (13.7%) | 86 (42.0%) | 87 (42.4%) |
| If I think my health is good (other than my cancer) |
15 (7.2%) | 16 (7.7%) | 55 (26.3%) | 74 (35.4%) | 49 (23.4%) |
| My feelings about the quality of my drug plan | 12 (5.9%) | 29 (14.1%) | 112 (54.6%) | 30 (14.6%) | 21 (10.2%) |
| Reinforcement | |||||
| If I received the results of the study once it was complete | 1 (0.5%) | 3 (1.5%) | 14 (6.9%) | 84 (41.4%) | 101 (49.8%) |
| If I would gain access to new study drugs | 1 (0.5%) | 4 (1.9%) | 17 (8.3%) | 77 (37.7%) | 105 (51.5%) |
| If the study reimbursed expenses | 1 (0.5%) | 0 (0%) | 38 (18.2%) | 94 (45.0%) | 76 (36.4%) |
| My experience with previous trials | 2 (1.0%) | 9 (4.4%) | 138 (67.3%) | 27 (13.2%) | 29 (14.1%) |
| Goals | |||||
| If I think participation would affect my social life/family commitments |
37 (18.0%) | 106 (51.7%) | 58 (28.3%) | 2 (1.0%) | 2 (1.0%) |
| My belief that participation would prevent me from my other activities | 39 (18.7%) | 98 (46.9%) | 65 (31.1%) | 4 (1.9%) | 3 (1.4%) |
| My belief that participation would interfere with other goals of mine | 36 (17.6%) | 102 (49.0%) | 64 (31.4%) | 2 (1.0%) | 2 (1.0%) |
| If I think participation would interfere with my childcare responsibilities |
33 (16.1%) | 42 (20.5%) | 129 (62.9%) | 1 (0.5%) | 0 (0%) |
| Environmental Context and Resources | |||||
| If there were patient-friendly decision-making tools to help you make your participation decision |
0 (0%) | 1 (0.5%) | 28 (13.4%) | 107 (51.2%) | 73 (34.9%) |
| If the study provided transportation to/from study appointments |
0 (0%) | 1 (0.5%) | 75 (35.9%) | 63 (30.1%) | 70 (33.5%) |
| If I think there is a substantial time commitment | 31 (14.9%) | 79 (38.0%) | 80 (38.5%) | 11 (5.3%) | 7 (3.4%) |
| My feelings about the quality of the health care system | 11 (5.4%) | 30 (14.7%) | 103 (50.5%) | 43 (21.1%) | 17 (8.3%) |
| Skills | |||||
| If I find the trial documents hard to understand | 64 (30.8%) | 87 (41.8%) | 48 (23.1%) | 6 (2.9%) | 3 (1.4%) |
| If the consent documents describe probabilities of side effects and numbers of patients affected by them | 17 (8.1%) | 76 (36.4) | 62 (29.7%) | 36 (17.2%) | 18 (8.6%) |
| Social/Professional Role and Identity | |||||
| My belief that participating would give me a sense of purpose | 1 (0.5%) | 1 (0.5%) | 48 (23.1%) | 96 (46.2%) | 62 (29.8%) |
| My belief that participation is part of my role as a good citizen | 8 (3.9%) | 4 (1.9%) | 68 (32.9%) | 77 (37.2%) | 50 (24.2%) |
| Knowledge | |||||
| My belief that I’d learn more about my condition if I participated | 0 (0%) | 1 (0.5%) | 24 (11.5%) | 104 (50.0%) | 79 (38.0%) |
| Optimism | |||||
| My hope that participation would help find a cure | 0 (0.0%) | 1 (0.5%) | 4 (2.0%) | 54 (26.3%) | 146 (71.2%) |
| Memory, Attention and Decision Processes |
|||||
| If the investigators provided telephone reminders about study appointments |
1 (0.5%) | 3 (1.4%) | 100 (48.1%) | 71 (34.1%) | 33 (15.9%) |
| Emotion | |||||
| My worry about unknown side effects | 50 (24.0%) | 119 (57.2%) | 30 (14.4%) | 7 (3.4%) | 2 (1.0%) |
red = barrier, green = enabler, yellow = no effect.