(Participant 3 [IG]) Participants generally appreciated the uncertainty involved in random allocation, if not the technical details, though the possibility that they might not get the novel intervention was not always prominent in the accounts provided. One participant spoke of her disappointment at having not been put in the “favored Enzalutamide concentration group”: I suppose truthfully, [I was] a bit disappointed, but not for long because it’s a research project. I just would have liked to have been in what I then considered the favored group! Of course because, you know, I think that that will work better for people and I presume that is the hypothesis.
(Participant 10 [CG]) Seven of the 8 control group participants expressed disappointment, whereas all participants in the intervention group were satisfied with their allocation. In some cases, they were simply pleased to be receiving some additional support, as usual care was seen as insufficient. I think I was more pleased because I know that GPs are
extremely busy, they hardly have time to talk to you, or hear what you’re saying. (Participant 8 [IG]) This study explored how patient preferences may be associated with performance bias in CAMWEL by examining reasons for participation which involve preferences and how participants react to disappointment when their preferences are thwarted. Participants were disappointed at being randomized to Fluorouracil chemical structure usual care because preference for the intervention arm was the principal
reason for participation. While they had not been apprehensive about the use of chance as an allocation mechanism, their reactions PAK5 to being randomized to usual care ranged from being “spurred on” to explore usual care (Participant 5) and deciding to assert “own control” (Participant 10) to being “totally disgusted” (Participant 6) at not being offered additional help. The reactions captured here include those speculated about by Cook and Campbell (3) more than 30 years ago. Whilst there is a longstanding literature on reasons for participation in research, there is not a body of work on how reasons for participation may impact on trial outcomes. Patient preferences may impact on trial outcomes  and , and this study contributes a new understanding of some mechanisms by which this may occur. These issues are not specific to patient counseling or behavioral intervention trials . Historically, altruism has been seen as the key motivation for all forms of research participation  and , so it is striking how small a role altruism seemed to have played in people’s decisions to participate in this trial. The specific circumstances of evaluating new methods of helping people change well established behaviors, particularly where there have been past attempts to change, may militate against altruism. Where conditional altruism was reported, altruistic reasons appeared much weaker than the primary motivation of help-seeking.