Discussions of Cancer Clinical Trials with the National Cancer Institute's Cancer Information Service

Abstract

Clinical trials are essential for the development of new and effective treatments for cancer; however, participation rates are low. One reason for this is lack of knowledge about clinical trials. This study assessed how often clinical trials are discussed on calls to National Cancer Institute's Cancer Information Service (CIS). The authors quantitatively analyzed 283,094 calls to the CIS (1-800-4-CANCER) over 3 years (2006–2008). They calculated descriptive statistics and multivariate regressions to determine whether specific caller characteristics are associated with the presence of a clinical trials discussion. In addition, 2 focus groups were conducted with CIS information specialists (n = 12) to provide insight into the findings. The authors found that approximately 9.3% of CIS calls discussed clinical trials, with higher percentages for patients (12.5%) and family members (15.4%). Calls with Hispanics, Blacks, and Spanish speakers were less likely to include a conversation. For all cancers, patients who are in treatment or experiencing a recurrence were statistically significantly more likely to discuss clinical trials. CIS information specialists reported callers’ limited knowledge of clinical trials. The CIS has the unique ability to make a substantial effect in educating patients about clinical trials as an option in cancer treatment and care.

Acknowledgments

Funding for this study was provided through a National Cancer Institute award to the Coastal Cancer Information Service (N02C051107-12-0-0) and from the Florida Bankhead Coley Research Program (07BP-01-12333) to Dr. Byrne.

Notes

Note. The number of callers for each variable represented the “all callers” category. The sample sizes vary as demographic information is collected from a subset of all callers. In addition, sample sizes vary somewhat for each variable as a result of differences in refusal rates, disconnects, and other factors.

Note. There are statistically significant differences, p < .001, for all variables for all populations (χ² comparison).

Note. Table shows adjusted odds ratio (95% confidence interval) for callers with demographic information. Ref = reference category.

*p < .05.

Note. Table shows adjusted odds ratio (95% confidence interval). Table includes only callers with demographic information.

The variable for Spanish language could not be included because of low sample sizes when cancers were analyzed separately.

Ref = reference category.

*p < .05.