TABLE 4.

Additional quotations illustrating main themes of interviews and focus groups

Theme 1: Patients accept decisions from trusted providers and friends	“1 didn’t know any other places. I just knew [my doctor] was good in his field because I heard a lot about him at work. A lot of people have [him] as a doctor. He had a good reputation, so I knew he wouldn’t steer me wrong.” [interview] “Well, I guess I really didn’t get a choice only because the nurse practitioner at the nephrologist office, she said to me one day, she said, where do you want to go for transplant. She goes, you got three choices. And she said, [center 1] or [center 2] or [center 3]. And evidently, I had a look on my face like I didn’t really gives a rat’s butt, so she says, you’re going to [center 2].” [focus group] “Well, let me see, how do I put it? I don’t want to say it wrong, but I’m thinking they have said there were other clinics but [my doctor] was saying that this one would be better for me. This clinic would be better for me, that’s what he told me.” [interview]
Theme 2: Confidence in perceived reputation of center	“[The surgeons at this center] were the first people to ever do it. So that makes you feel comfortable about it. Because if they were the first people that were doing it and are still doing it… so obviously it has to be good” [interview] “I think learning about the doctors. I do not know that facilities are all that different, are they? Because, you know, it is the doctors in the end that is the important thing.” [H] [interview] “I think for me, what’s important, too, is just the follow-up care afterwards and making sure that they’re following along with you closely.” [H] [focus group]
Theme 3: Personal relationships and convenience were important	“I would have liked to see more information on travel since I live, I just moved, so I live four and a half hours away now.” [interview] “They treat you with like a human being.” [H] [focus group] “Now for me it is familiarity even though this is a different office than it was before. Why fix it if it is not broke?” [interview] “I decided to go with the one that was not a teaching hospital because I preferred to develop a more direct relationship with the doctors rather than having residents and medical students always in the room and asking questions and stuff like that.” [focus group] “I guess if there is a way that the transplant center could help find housing close for like a week’s stay, what they talk about as far as after your transplant.” [H] [interview] “A lot of people are, but you know, having an outreach program or a person or people—who are willing to take a half hour to three hours to have family members, answer their questions, to me is extremely important because you have got all these emotional things going on.” [H] [focus group]
Theme 4: Insurance coverage was both a source of useful information about choices and a barrier that limited choices.	“My insurance only covered [two centers] and [my doctor] said that [one of these] was at the time going through some organizational changes” [focus group] “My insurance wouldn’t approve me to go on their transplant list.” [focus group] “My insurance did recommend that I go to the scientific registry to find out about different hospitals.” [focus group]
Theme 5: Unique medical circumstances create a need for more information	“I talked to them while I was in the hospital … the coordinator came and talked to me and she was like well, you’re awfully complicated so I’m going to show your medical history to the surgeon and see if he even wants to try, or even wants to evaluate you at all. He was like ‘no’ so I never got evaluated there.” [interview] “I want a list of the most risk tolerant facilities in the nation, who still apply safe practices and have relatively good statistics. Because it’s clear [the first center], who is relatively risk adverse, is not going to speak for me.” [interview] “I read it online as an option because my antibodies are at 100 percent so I knew I needed to do something so I had just checked out what they had. They claim to offer more than the [other center] so I had to check out my options down there.” [interview]
Theme 6: Incomplete information	“[This center] was it; I didn’t know much of anything else at the time.” [interview] “Then, the only reason why I knew about the four different places, the four different transplant centers in this area is because I got a slip of paper with four different names, with four phone numbers. That’s it. That is all. It was pretty much up to me to do my own digging for it.” [focus group] “I did not really honestly research any other places, but we were made aware of other lists that you can go on and that if you were on other lists, you would have to go to those facilities.” [interview] “I wasn’t told that I can even look at other places although I knew about both [nearby centers] from family and friends and coworkers who have had kidney transplants through those other facilities. But, I was never told that I had a choice to go look at any of the other places. So, I just kind of went with what was thrown at me.” [focus group] “I wasn’t told anything about any transplant centers at all. I still haven’t been told.” [focus group] “My dialysis center had a list of four hospitals in Minnesota that do transplant. They gave it to me and said, ‘You are on your own.’ Basically. Very daunting. Very frustrating. Like anybody that has had a new disease, you are trying to find out what it is you have got, much less where to go next. Lots of confusion.” [focus group] “I was on dialysis and one of the nurses there said to my caregiver; where else is she listed? You know she’s too young to be on dialysis. She’s too alert. Where else is she listed? We didn’t really know anything about multiple listing. I mean I might have been told, but I wasn’t in the right frame of mind to be listening. But from that point on I got listed at four other places.” [focus group]
Theme 7: Unaware of center differences and risks that are relevant to mortality	“Yeah. It raised more questions than answered them. So it’s just confusing. Like I said before, you have to put your name on a certain list and you have to go to all these different places to – [another center] had the best, one of the best turn-arounds. It was only a couple years versus other places. And it was like, why the heck does it – [that center’s] only a few hundred miles away. Why the heck is it – you know what I’m saying? So it just didn’t make sense to me why.” [focus group] “Right, [a center with different criteria for listing] has a lot to do with how risk adverse the center is.” [interview] “No, I just assumed everybody was going to be the same [for listing criteria]” [H] [interview].
Theme 8: Overwhelmed with information	“I think anybody here who has ever been through a diagnosis and trying to figure out what is next, you get shuffled into the treatment and you still do not know what it is you have got or where you are going with the transplant.... It takes time for people to understand.” [focus group] “At my age, I feel a little bit more overwhelmed by all the minutia, paperwork, and the insurance, and just dealing.” [interview] “You know, it’s unfortunate that patients have to do as much as they have to do.” [interview]
Theme 9: Limited access to or mistrust of Internet	“It kind of concerns me a little bit the development of a web site, because in this day and age of technology it is easy to say, “Well, just go check our web site.” And it is only as good as the information A) it is there and B) the capability of the people to absorb that. And not everybody is going to be tech-savvy.” [H] [focus group] “[The internet] is just so vast and then I find myself trying to apply things to myself that maybe do not apply and trying to make it fit. So I think it is better off just to wait and ask a doctor” [interview]