Abstract
Objectives
We 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.
Methods
We 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.
Results
Usable 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.
Conclusions
End-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.
Keywords
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Article info
Publication history
Published online: May 07, 2012
Accepted:
April 3,
2012
Received in revised form:
March 6,
2012
Received:
November 24,
2011
Footnotes
☆Financial Support: Supported in part by a grant from the Canadian Cancer Society and a research scientist award to Dr. Shabbir Alibhai from the Canadian Cancer Society.
Identification
Copyright
© 2012 Elsevier Inc. Published by Elsevier Inc. All rights reserved.
