Table 2.
Pre consultation frequencies for questions patients wanted to ask (Highest to Lowest Frequency) (N = 30)
| Question | Wanted to ask (%) |
|---|---|
| 7 What is already known about the treatments success? | 25 (83.3%) |
| 13 What are the risks of taking the new treatment? | 24 (80.0%) |
| 21 How long has the trial been going on? Are there any concerns about it? | 24 (80.0%) |
| 11 Has the benefit of the new treatment been proven in people like me? | 23 (76.7%) |
| 23 If the treatment is beneficial how can I get it, (if I am not already on it)? | 23 (76.7%) |
| 18 How often will I need to come in for treatment? | 22 (73.3%) |
| 26 Will I know what treatment I am getting, or is the trial blinded? | 22 (73.3%) |
| 2 Why are you offering me this particular trial? | 20 (66.7%) |
| 1 What is the usual (standard) treatment for people in my situation? | 19 (63.3%) |
| 4 What other trials am I eligible for? What makes me eligible? | 19 (63.3%) |
| 32 If I join the trial will I be losing out on any new treatment opportunities? | 19 (63.3%) |
| 33 Can I have alternative therapies if I go on the trial? | 19 (63.3%) |
| 5 How can I learn more about the trial? | 18 (60.0%) |
| 20 Is the new treatment only available through joining in the trial? | 18 (60.0%) |
| 3 Are there choices other than the trial and the standard treatment? | 17 (56.7%) |
| 8 How does the treatment work? | 17 (56.7%) |
| 9 What benefits could I possibly get if I join the trial? | 17 (56.7%) |
| 12 What does response rate mean? | 17 (56.7%) |
| 17 If I enter the clinical trial, will it mean more tests & clinics and cost me extra money? | 17 (56.7%) |
| 15 Whom can I call if something goes wrong? | 16 (53.3%) |
| 6 What is the purpose of this trial? | 15 (50.0%) |
| 14 Will there be side effects on the trial which I won’t get on the standard treatment? | 15 (50.0%) |
| 29 Will you still treat me if I decide not to go on the trial? | 15 (50.0%) |
| 19 Will the treatment be given by experienced staff? | 14 (46.7%) |
| 30 Do I have time to think about whether to go on the trial (a day or two, or a week)? | 14 (46.7%) |
| 27 Are you in charge of the trial? If not, what’s your role in the trial? | 13 (43.3%) |
| 10 If I join this trial how might others benefit? | 12 (40.0%) |
| 24 How will the results of the trial be used? | 12 (40.0%) |
| 25 Is this trial randomized? What does that mean and why is it important? | 12 (40.0%) |
| 31 If I join the trial, but later change my mind, how can I stop? | 12 (40.0%) |
| 16 If I get a side effect or injury because of being in the trial, will I get compensation? | 11 (36.7%) |
| 22 How will my confidentiality be protected? | 11 (36.7%) |
| 28 Does the trial sponsor make a payment to the hospital or to you as my doctor? | 10 (33.3%) |