Attitudes towards clinical research amongst participants and nonparticipants

Abstract. Madsen SM, Mirza MR, Holm S, Hilsted KL, Kampmann K, Riis P (Copenhagen University Hospital in Herlev, Herlev, Denmark; Odense University Hospital in Odense, Odense C, Denmark; University of Manchester, Manchester, UK; Copenhagen University Hospital in Herlev, Herlev, Denmark; and Odense University Hospital in Odense, Odense C, Denmark). Attitudes towards clinical research amongst participants and nonparticipants. J Intern Med 2002; 251: 156–168. Objectives. To investigate attitudes to clinical research amongst cancer trial participants and nonparticipants, and to compare results with those from previous studies amongst participants in noncancer trials. Design. Trial participating respondents were given three questionnaires during the clinical trials. Respondents amongst patients declining randomization answered a single questionnaire. Setting. Participants and nonparticipants in randomized clinical cancer trials. Subjects. Forty‐one participants and 47 nonparticipants in cancer trials. Results. Altruistic motives of physicians to conduct medical research were highly rated. Attitudes towards clinical research were positive in all groups, with nonparticipant respondents being the least positive. Eight to nine tenths found scientific testing necessary before general health service implementation. Trial participants were, as compared with nonparticipating respondents, more positive towards both participation of self and others. Both personal and altruistic motives for participation were highly rated. Primary reasons for nonparticipation were fear of ‘the unknown’ and/or unease with randomization. Only a minority felt a moral problem created by declining trial participation. Respondents amongst noncancer participants were more satisfied with the information given than both cancer participants and cancer nonparticipants. Negative experiences in cancer participants generally dealt with frustration related to seeing too many physicians at check‐up appointments. Conclusion. Attitudes towards clinical research are generally positive even in cancer nonparticipants. Both personal and altruistic motives for participation were highly rated. A fear of ‘the unknown’ and resentments towards randomization were primary reasons to renounce participation. Seeing too many physicians at check‐up appointments seems to be an important factor for negative experiences in cancer trial participants.