Table 2.

Patient Quotes

Patient knowledge and beliefs about clinical trials	Participant and date
“I had no idea about clinical trials. It was foreign to me. It's like a foreign word. I had never heard of it before.”	Participant 17, 6/6/11
“I believe in them, and I do believe that they help in doing things and improving medicine, and improving the different kinds of things that happen to people. I always believed in MCV, VCU.”	Participant 27, 8/18/11
“They are necessary, and they are needed to help with bringing about changes in the medical field; as far as what I do with my research, stuff is going to help somebody down the road with their illness. So it is necessary, but this particular one, the one I denied, I could not see, just looking at all the statistics, the bad outweighed the good. You understand? I know sometimes we do things to try to help others, but I could not see putting my body through all that, and it may not even have helped.”	Participant 12, 7/19/11
“I believe that clinical trials are great, and they give great help to people who are really needing help in whatever it is. I do believe in them, and I would participate if I were at a level in my illness where, you know, I was getting close to last resort or something. Maybe not even then, but just to make sure that I got the best of care and the best of medicine.”	Participant 20, 6/27/11
Discussing clinical trial participation
“Well, why don't we call it a protocol person or something like that.”	Participant 6, 12/7/10
“No, just was another lady that I talked to before I had seen my doctor. So, she was some administrator. I don't know who she was exactly. But she had asked me some time ago.”	Participant 5, 12/3/10
“He talked to me about my options and the different things I could do if I wanted to do anything at all. And I'm like, OK, and he's talking, and then . . . he told me right there that there is a drug trial and it's very promising, and that we have to do the trial before it can be used, and would I be interested in doing that? And he was like, I would recommend it, when I put him to the test, that you try this and everything, OK, and as we went on and I'm thinking, OK, so I'm going to get this drug. But as I found out later, you may and you may not get it. And then that was the no answer.”	Participant 8, 12/9/10
“Yeah, we talked about it. I talked about it with him, and he told me that was my prerogative not to do it, but don't deny myself other research, clinical trials. And so I am actually participating in one as we speak.”	Participant 12, 7/19/11
Factors influencing the decision not to participate
Randomization by computer
“And then the random picking, you know . . . it sounds like you're picking numbers or lottery numbers or stuff. I didn't really like that part, that you don't pick what you want, a machine or computer picks what you're going to get; I didn't really like that.”	Participant 14, 4/29/11
“My understanding was that they put your information in the computer . . . and it decides which one would be best for you . . . initially I thought I wanted to do that, but then I was like no I didn't want to be experimented on. So I went with the standard one, since that's the one they think is helping most people, so I went with that one. Because I couldn't choose the one I wanted, I would have picked the three medicines, but because I couldn't choose myself that's why I went with the standard one.”	Participant 10, 3/9/11
Extra adverse effects
Patient: “I think that my health is in a situation where I needed to have something as predictable as possible, or as effective and predictable as possible.”	Participant 25, 7/29/11
Interviewer: “OK, and then you had also mentioned a concern about side effects. Was it your understanding that the side effects would be greater with the trial?”
Patient: “Yes, I would have more, I would already have side effects and then I would have additional side effects.”
Extra burden and family influence
“My mom is very supportive of me. Even though I'm 50, my mom still thinks I'm five . . . She didn't want me to do no kinds of clinical trial at all, because like she said, this is the way she put it . . . I don't want . . . you [to be] no guinea pig . . . She say you know you're too fragile, I don't want nothing to happen to you . . . so her answer was no. But like I said, my reason was the timing. But my mom is my support, so . . . I take to heart what she has to say.”	Participant 5, 12/3/10
“I think my son was with me. We talked about it, and he was like, it wasn't worth the risk. I explained, and we talked about it, and he was like, Mom, you're going to have to wear a diaper, you don't know what's . . . and you know, he's 23, 24 years old, so that has a profound effect on him. He was like, I really don't want you to do this. He was scared; it was a frightening time . . . So, not just him, but my entire family, we had an entire discussion on it. I have a nurse practitioner in my family, I have two nurse practitioners, I have a doctor, and I have a nurse, so I ultimately went to them and said, help me. And they were like, you could end up with kidney cancer.”	Participant 12, 7/19/10
“With, OK, you have cancer, you have to do chemo, you have to have surgery, you have to do all this stuff, and they want to put you on this drug that's not been approved by [the] FDA, and it's a clinical trial, and you could possibly have kidney cancer by the time it's all over. And like I said, I understand the process, but maybe it needs to be dealt with more delicately. Because like I said, initially coming in, everything is new, all this information; I had information overload, my brain was about to combust, and it was just too much.”	Participant 12, 7/19/11