The guinea pig syndrome: improving clinical trial participation among thoracic patients.

ABSTRACT

BACKGROUND: The purpose of the study was to examine lung cancer patients' knowledge, attitudes, and behavior regarding clinical trials and to develop an effective intervention for increasing patient knowledge and awareness of clinical trials for lung cancer patients. METHODS: Qualitative semistructured, in-depth interviews were conducted with (1) new patients who had not yet interacted with their physicians, (2) existing patients who had participated in a clinical trial, and (3) existing patients who had not been offered a trial. Findings from the interviews led to the creation of a letter that was sent to all new patients before their first appointment, explaining that offering a clinical trial at this hospital was the norm, to expect this discussion, and the option of standard treatment was always available. RESULTS: Results showed new patients and established patients had similar perceptions of trials--the fear of being a guinea pig, offering a trial meant no hope, and misconception of purpose. Existing patients who had participated in a trial expressed positive benefits of trial participation, even if their health did not improve. A year after the letter process was initiated, accrual rates increased 18% and approximately 81% of all eligible lung cancer patients were in a trial. CONCLUSIONS: The letter, addressing patient's preexisting fears about being offered a clinical trial, appears to show some initial success in improving clinical trial accrual.