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Table 5 Hypothetical altruists with trial understanding

From: How informed is declared altruism in clinical trials? A qualitative interview study of patient decision-making about the QUEST trials (Quality of Life after Mastectomy and Breast Reconstruction)

[Preference] Was to have as much surgery done in one go really to be honest […] because from being diagnosed, the whole treatment pathway it’s really lengthy, everyone can appreciate that. In my mind delaying the reconstruction would have just lengthened that even more […] From what I remember, I could’ve pulled out at any time from the trial anyway. I wouldn’t have wanted to and I don’t think I would have done, but I was fully aware that I could pull out at any time which was fair and I did appreciate that.

[On randomisation] …people can be put into a system and you were randomly picked [for different surgical options] from what I believe…. It makes it a little bit more fair doesn’t it? Hopefully you get a completely different cross-section of ladies taking part, following each process really, but you’re not getting say for example, all the ladies my age doing it one way and then all the ladies of an older age doing it the other way, then of course it’s not a fair representation is it of everybody involved.

Trial acceptor, full understanding of randomisation (participant 15)

Participant: I was told from very early on if you have a strong view and it comes back with what you don’t want you can opt out of the trial at any time […] I didn’t want an implant because I looked further into possible post-op complications and things and when it came back it was a non-implant so that was fine. I actually in the couple of days, because I went, I think it was the Thursday, and they put me in for the trial and then the randomisation came back on the Monday, so over the weekend I was thinking please don’t let it be an implant, please don’t let it be an implant. Anyway it came back and it wasn’t an implant so that was fine.

Interviewer: What do you think you would have done if it had come back with the other option?

Participant: I probably would have gone with it anyway because I absolutely trust the team that are looking after me. I think that was the most important thing that you trust the team that are caring for you and my surgeon was absolutely adamant that both outcomes would be as good.

[On randomisation] In order to be able to be on the trial I had to be suitable for either a reconstruction with an implant or without an implant … and the randomisation happened in that no one person decided, a computer spit it out or somebody spit it out and it meant that it wasn’t down to my choice […] Nobody chose, it was a computer or a person picking a name out of a hat that chose rather than the surgeon and stuff so that meant that my experience wasn’t influenced by anybody.

Trial acceptor, full understanding of randomisation (participant 13)