Assessment of barriers to patient participation in clinical trials among oncology outpatients at a community teaching hospital in Toronto.
Authors: Shamrakov L , Sampson H , Nyhof-Young J , Rahim Y 
Published: December 2010

Abstract
Abstract #2103
Background: This study investigated barriers to patient participation in clinical trials (CTs). In particular, the effect of educational attainment on the understanding of, interest about, and past participation in CTs among cancer patients at a Toronto community teaching hospital was assessed.&#x2028; Material and Methods: A survey was administered to cancer outpatients, containing Yes/No answers, Likert scales and written response answers. Responses were analyzed quantitatively (SPSS) and qualitatively (constant comparison, descriptive thematic analysis).&#x2028; Results: 101 questionnaires were completed out of 112 administered (90% response rate). 76% of patients self-reported as knowledgeable about clinical trials. Patients' education level correlated to their perceived knowledge of clinical trials:37.5% of patients with a less than grade 9, 59.4% with a high school, and 90.2% with a university background identified themselves as knowing what CTs are. All patients scored poorly on details and held common misconceptions of CTs (e.g. knowing little about placebos and experimental drug testing). Overall, 27% of patients had been previously enrolled in CTs. Of the 34% of patients who had been previously approached, 79% had agreed to participate. This result is higher than figures reported in literature, and slightly higher than a recent Canadian study at an academic center. The majority were willing to participate or unsure of participating in CTs. A minority stated they will never participate in a trial. Patients identified altruism, curiosity, personal benefit, alleviation of financial burdens, last resort treatment, and a desire to contribute to medicine as participation motivators. They identified unknown side effects, and risk of illness or death as reasons to decline. These concerns were consistent with previous studies. Patients also identified concern about lack of hospital resources about CTs and a desire to have a doctor present when learning about CTs. Patients with less education identify a greater desire for a doctor's presence than those with more education.&#x2028; Discussion: This study revealed lack of staff recruitment, low patient awareness, and lack of availability of trial facilities as potential barriers to participation. Targeted information to patients with different education levels may be appropriate, given variable knowledge about CTs. Education and counseling regarding placebos and experimental drugs should be targeted towards all patients to reduce barriers to patient participation, diminish myths, and increase understanding and interest. In response, this institution will design a brochure for all patients explaining and describing clinical trials, providing a glossary of terms, and offering a list of key resources. Availability of such information at oncology centers will in turn improve awareness and trial recruitment.
Citation Information: Cancer Res 2009;69(2 Suppl):Abstract nr 2103.