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Research information knowledge, perceived adequacy, and understanding in cancer clinical trial participants
1Skip Viragh Center for Pancreas Cancer Clinical Research and Patient Care, Sidney Kimmel Comprehensive Cancer Center, Johns Hopkins, Baltimore, MD, USA. biedrba@jhmi.edu
Purpose/Objectives:
To describe the adequacy of research information among people with cancer at the time they accept or decline participation in a cancer clinical trial.
Design:
Cross-sectional, descriptive.
Setting:
An urban, academic, National Cancer Institute-designated comprehensive cancer center.
Sample:
197 patients with advanced gastrointestinal cancer.
Methods:
Mailed survey; self-reported data.
Main Research Variables:
Adequacy of research information (actual knowledge, perceived adequacy of information, and perceived understanding), cancer clinical trial participation, and satisfaction with the decision to participate.
Findings:
Most respondents (88%) perceived themselves as having adequate information to make an informed decision regarding cancer clinical trial participation. In addition, 35% demonstrated adequate knowledge of basic clinical research.
Conclusions:
Patients decide to accept or decline cancer clinical trials without having adequate knowledge.
Implications For Nursing:
Nurses have an important role in educating patients regarding cancer clinical trials. The ideal teachable moment may not occur at the time of diagnosis; other less stressful opportunities may present when the patient is more receptive.
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