3. Clinical Trials Knowledge in Oncology Patients: a Comparison of Actual Knowledge versus Trialists’ Priorities

Abstract

Background: Advancements in oncology depend on clinical trials, yet recruitment to trials remains poor. Previous efforts to increase enrolment by providing educational materialsto patients have improved patient understanding of trials, but not recruitment. To understand the clinical trials knowledge gaps among oncology patients, surveys of patients and trialists were conducted and compared. Methods: Patients completed a questionnaire measuring their understanding of key concepts in clinical trials. Twenty-two “true/false/do not know” knowledge questions, two 5-point Likert opinion questions, one free-text space and demographics were collected. Trialists (nurses and physicians) completed 13 five-point Likert scale questions plus freetext space to measure the importance they placed on patient knowledge of specific topics. The relationship between what trialists valued and actual patient knowledge was compared. Results: Patients thought they had a good understanding of clinical trials (50%) however this apparent understanding of clinical trials was not reflected in the scoring as only 58.3% (SD 23.5) of questions were answered correctly. There were positive associations shown between education level, personal belief of understanding and willingness to join a clinical trial with percentage of correct responses (p=0.006, p<0.001, p=0.002 respectively). For topics given high knowledge priority by trialists, patients gave correct answers for lessthan 50%. Conclusion: Among patients with cancer, there is a poor knowledge of clinical trials and a gap between what trialists think patients ought to know and actual patientunderstanding. These results support the development of educational materials on clinical trials for oncology.