Clinical trial knowledge, discussion, and participation among cancer survivors: A HINTS-SEER study

Patient Educ Couns. 2024 Dec 12:132:108605. doi: 10.1016/j.pec.2024.108605. Online ahead of print.

Abstract

Objectives: Clinical trial knowledge and discussions about clinical trials with healthcare providers contribute to clinical trial participation and clinical trial representation. This study explored 1) the association of patient-provider communication with clinical trial knowledge, 2) how patient-provider communication impacts the associations of demographic and clinical factors with clinical trial knowledge, and 3) motivations for clinical trial participation among people with a history of cancer.

Methods: Cross-sectional data from the 2021 Health Information National Trends Survey-Surveillance, Epidemiology, and End Results (HINTS-SEER) study included 1201 adult cancer survivors recruited from three SEER registries. Multivariable logistic regression models estimated adjusted associations of sociodemographic and clinical characteristics with clinical trial knowledge (none, a little bit/a lot) with and without the inclusion of clinical trial discussion with a healthcare provider (yes, no).

Results: Approximately three-quarters of cancer survivors reported having at least "a little" knowledge about clinical trials, though only 15 % reported having discussed clinical trials with their provider. Those who reported patient-provider communication about clinical trials had 8.71 times higher odds of having some clinical trial knowledge. In multivariable logistic regression, odds of knowing at least a little bit about clinical trials were lower among adults without a college degree and among Hispanic and Non-Hispanic Asian (versus Non-Hispanic White) adults. Associations of demographic factors with clinical trial knowledge were not impacted by the inclusion of patient-provider discussion in the model. Top motivations for clinical trial participation were helping other people, new treatment, and getting better.

Conclusion/practice implications: There is a need to ensure information about clinical trials is provided to all people with cancer and to facilitate high quality communication between patients and providers about clinical trials.

Keywords: Cancer survivor; Clinical trials; Patient-provider communication.