Overcoming Barriers in Conducting a Transatlantic Prostate Cancer Familial Study in Africa: Best Practice From the CaPTC Cohort Study

Background: Collection of data concerning men's health generally and urological health particularly has always had its challenges, especially in the African setting. Some of the difficulties stem from cultural factors that consider sensitive topics pertaining to men's health as taboo. Aim: To determine how to overcome barriers in conducting a transatlantic prostate cancer familial study in Africans. Methods: After the first phase of the TRANSATLANTIC PROSTATE CANCER FAMILIAL PROJECT STUDY, a survey was carried out among the data collectors and principal investigators using Qualtrix software to collect qualitative feedback on the study. The data from the survey was analyzed using SPSS version 18. Results: Presently, 625 people are enrolled for the study and more are waiting to be recruited in the next phase. About 73% of the participants requested a home or office visit rather than visit a data collection center. On the average, the questionnaire required an average of two hours of personal interview rather than the one hour that had been envisaged. However the participants declared that participant incentives were well worth it. 80% of the participants had no preference for interviewer gender. 80% of the interviewers agreed that answers to questions about participants' sexuality were most difficult to obtain but with an in-depth explanation of the importance of the study and assurance of privacy, the answers were obtained. About 46% of the participants requested that their results be typed and given to them personally, 21% requested results be sent as to them as text messages while 26% requested general results of the study be made available to them in form of booklets, flyers and orally in town hall meetings. Conclusion: The TRANSATLANTIC PROSTATE CANCER FAMILIAL PROJECT STUDY survey questionnaire is a very workable tool that has a high acceptance rate among participants. The best practice for engaging the community for research include community mobilization through sensitization visits and one-on-one talks, use of community 'gatekeepers', introduction by relatives, assurance of privacy of health data obtained, the use of incentives and a promise to give feedback on the results of the study both on a personal and community level.