Expressed willingness to participate in five-year anal cancer prevention study after participation in previous anal cancer prevention study
MacDonald, Madeline Rachael
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INTRODUCTION: Anal cancer is increasing in the population, especially in HIV positive individuals. The group that currently has the highest incidence of anal cancer is HIV positive men who have sex with men. There are a number of treatment methods available to prevent pre-cancerous lesions called high grade squamous intraepithelial lesions (HSIL) from developing into cancer, however, these treatments are not currently routine. Randomized control trials are currently being conducted to assess the efficacy of these treatments in preventing anal cancer in high-risk populations. It is important to understand the motivations of individuals who are seeking to participate in anal cancer prevention studies. It is also important to learn about the experiences of participants who have enrolled in anal cancer prevention studies, and have in some situations undergone invasive procedures to treat their HSIL. METHODS: Participants in the AMC 076 study, an anal cancer prevention randomized control trial were recruited for the IMPACT 076 study. Two phone interviews were conducted and audio recordings were saved. Transcripts of the first set of interviews for 21 participants were analyzed and coded to gather qualitative data on the willingness of participants in the AMC 076 study to participate in a five-year anal cancer prevention study based on their experiences with pain and/or side effects in AMC 076. The research question about participation in the five-year study was hypothetical and not for the purpose of recruitment for the five-year study. RESULTS/DISCUSSION: We categorized participants into one of four groups: treatment group/treatment naïve, treatment group/treatment experienced, observation group/ treatment naive, and observation group/treatment experienced. When considering all participants who have received treatment at some point (either in the study or before the study), nine out of the thirteen would be willing to participate in the five-year study, three would not, and one was undecided. CONCLUSION: We concluded that previous pain or side effects did not appear to deter participants from participating in a five-year study. Based on the results of this study, the most common motivator for participation appeared to be altruism. The most common deterrent for participating in the five-year study was participants feeling that five years is too long to have their HSIL left untreated if they were to be randomized to the observation arm of the five-year study. Overall, participants were willing to deal with the pain and/or side effects of the exams and/or treatments in exchange for the feeling confident that their HSIL was removed or monitored and their risk of developing anal cancer is greatly reduced.