Research Information Knowledge, Perceived Adequacy, and Understanding in Cancer Clinical Trial Participants

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.