Abstract P2-12-02: Perceptions about cancer clinical trials among metastatic breast cancer patients: Findings from a patient powered registry
Authors: Morris Anne , Miller Melissa , Harvey Allison , Golant Mitch , Buzaglo Joanne 
Published: May 2015

Abstract
Background: An estimated 155,000 people are living with metastatic breast cancer (MBC) in the US. With new developments in treatment, people are living longer with MBC. Advances in treatment are handicapped by patients’ limited (3-5%) participation in cancer clinical trials (CCTs). While much effort has been placed on better training physicians and health care providers in talking to their patients about the appropriateness of such participation, barriers remain.
Methods: Since March 2013, the Cancer Support Community has registered 909 people living with MBC to the Cancer Experience Registry, an online initiative designed to learn and raise awareness about the psychosocial impact of cancer. 557 registrants responded to questions about their beliefs, attitudes and experience with CCTs. This sample was 99% female, 91% Caucasian, and 69% with a college degree and median age 56. Median time since MBC diagnosis was 3 years.
Statementpercent agree or strongly agreepercent agree or strongly agree if did NON take part in CCT n=419percent agree or strongly agree if DID take part in CCT n=126pI am uncomfortable with being randomly assigned to a treatment6768600.001&lt;I do not trust the medical establishment and fear I will be used as a guinea pig for research182080.01I fear receiving a placebo in a clinical trial6366520.001&lt;I do not understand what clinical trials are6720.001&lt;I fear side effects that might come with treatment on a clinical trial5458430.001&lt;I would be unable to fulfill trial requirements due to logistical barriers such as transportation2224130.001&lt;There are no clinical trials available in my community2225120.001&lt;My health insurance would not cover it2730180.001&lt;
Results: Only half of registrants reported that a member of their health care team spoke to them about participating in CCTs. Nearly one-quarter (23%) report that they took part in a CCT. 48% considered a CCT as a treatment option for their MBC and 34% did not know if a CCT was available to them. 67% are uncomfortable with being randomly assigned to a treatment. 18% do not trust the medical establishment and fear they will be used as a "guinea pig" for research. 63% fear receiving a placebo in a CCT; however, only 6% report that they don’t understand what clinical trials are. The table below shows differences in beliefs between those who report participating in a CCT and those who have not participated in one.MCTConclusion: This population of MBC patients reports a range of experiences and often conflicting beliefs about CCTs. While this survey is limited to self-report data, there is persistent suspicion among these women about participating in CCTs. Although these women report that they understand what a CCT is, they fear receiving a placebo and being randomized to different treatment arms without at least the standard of care. These misconceptions persist even among people who have participated in a CCT. These findings highlight the need for treatment decision counseling that educates patients about all their treatment options including CCTs and for training of health care providers to better inform patients about CCTs.
Citation Format: Anne Morris, Melissa Miller, Allison Harvey, Mitch Golant, Joanne Buzaglo. Perceptions about cancer clinical trials among metastatic breast cancer patients: Findings from a patient powered registry [abstract]. In: Proceedings of the Thirty-Seventh Annual CTRC-AACR San Antonio Breast Cancer Symposium: 2014 Dec 9-13; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2015;75(9 Suppl):Abstract nr P2-12-02.