Effective communication of study results to older participants with prostate cancer: Results of a survey

ObjectivesWe examined attitudes towards, satisfaction with, and costs associated with providing end of study feedback in a group presentation format to older men participating in an observational prostate cancer study. We also aimed to capture the resources required for such a presentation.MethodsWe invited all 186 participants of a longitudinal matched cohort study examining health effects of androgen deprivation therapy in men with prostate cancer who were attending an end-of-study presentation to complete a survey exploring attitudes towards and prior experience with end-of-study results. We also explored the burden communicating end-of-study results might place on study investigators and clinicians.ResultsUsable surveys were returned by 59 of 70 presentation attendees (84%). Thirty-nine of 59 respondents were study participants while the rest were spouses or guests. Eighty-five percent of respondents agreed/strongly agreed that they had a right to know end-of-study results. Forty-six percent wanted to receive results via email while 45% wanted a group presentation. One-third of respondents had participated in clinical research before; of these, 84% never received study results. Ninety percent of respondents indicated that they were more likely to participate in a study if they knew results would be provided to them. Total resources were under 40 hours and $670 CAD.ConclusionsEnd-of-study results are expected by most study participants. Presentation of aggregate results in a group format may be an effective and efficient way to communicate study results. Including a commitment to an end-of-study presentation may enhance recruitment. Attitudes of non-attendees should be examined in future research.