Who talks about cancer clinical trials? Evaluating factors related to clinical trial interactions in the NCI's Cancer Information Service

Background: In order to increase cancer clinical trial (CTT) participation and access to quality care for all cancer patients -- especially from underserved communities -- it is critical to understand who is receiving information regarding clinical trials and who may not be. Through 1-800-4-CANCER, the NCI's Cancer Information Service (CIS) provides information on all aspects of cancer, including clinical trials. We explored the prevalence and characteristics of CTT discussions during CIS calls. Methods: We analyzed information on all calls to the CIS from 2006-2007. Information available for all callers (n=241,445) included: type of caller, cancer site discussed, language of call, and discussion topic(s). Information on sociodemographics was collected for 41,991 callers. To better understand discussions of CTT, this quantitative data was supplemented with qualitative data from focus groups with bilingual CIS cancer information specialists. Results: The percentage of calls with CTT discussions was 6.86% for all callers, 9.96% for patients, and 11.42% for family members. CTT discussions were substantially more common for English language (7.12%) than Spanish language (1.76%) calls. Multivariate regression showed the following significant associations for CTTs discussions: caller type (AOR 6.09 patients, 6.19 family members), Spanish language calls (AOR 0.70), Black race (AOR 0.52), education (AOR 1.85-3.05 higher education categories), and income (AOR 1.38-1.86 higher income categories). Conclusions: There are substantial disparities in who is having CTT discussions. Improved understanding of these inquiries can guide the development of culturally relevant interventions to lessen gaps in knowledge regarding clinical trials and to increase informed decision making regarding participation.