Abstract A086: Factors influencing women's attitudes toward participation in breast cancer clinical research
Authors: Rippberger Ellen , Chavez Noe , Chavez Tanya , Thai Christine , Sanchez Angelica , Wong Angela , Herold Karen , Nenez Alan , Rounds Krista , Seewaldt Victoria 
Published: August 2020

Background: Recruiting participants who are representative of the population as a whole is essential to ensure the development of treatments that benefit all rather than a select few. Understanding the reasons patients accept or decline participation, and then making adjustments to the recruiting process based on these findings, is one way to encourage study participation.

Aim: To better understand what factors influence a potential participant's decision to either accept or decline participation in breast cancer trials.

Methods: These are preliminary data from a pilot study that uses a short questionnaire to investigate which factors influence a woman's consent or decline to study participation. Women are approached for this study after being asked to participate in one of three other breast cancer trials targeting women who either have breast cancer or are at high risk for breast cancer. Women are approached for this study regardless of their decision to participate in the previous study. Participants are asked a set of questions about 1. the specific interaction they had with the consenter from the previous study, 2. general characteristics of a consenter, and 3. research in general. Demographic information is also collected for future analysis of responses based on race/ethnicity, income, education level, and primary language.

Results: A total of 24 participants have completed the questionnaire so far, with an accrual rate of approximately 25 patients per month. Participants ranked the importance of the various factors on a 4-point scale with 1 being “not important at all” and 4 being “very important.” Factors that participants indicated were the least important to their decision to participate were: financial compensation (xÌ… 1.07), racial/ethnic parity between consenter and consentee (\bar x $ 1.19), consenter looking like someone from their community (\bar x $ 1.19), gender parity (\bar x $ 1.19), religious beliefs (\bar x $ 1.38), pleasing their doctor (\bar x $ 1.56), and feeling overwhelmed (\bar x $ 1.85). Factors participants indicated were the most important to them were: the desire to benefit others in the future (\bar x $ 3.63), to benefit their family (\bar x $ 3.56), to acknowledge the contributions of past generations (\bar x $ 3.20), the feeling participation was “the right thing to do” (\bar x $ 3.15), presence or lack of potential side effects associated with participation ((\bar x $ 3.15), feeling empowered by the consenter (\bar x $ 3.15), feeling the consenter was listening (\bar x $ 3.11), and trust in research (\bar x $ 3.07).

Conclusions: Concerning the consenter, physical characteristics such as race/ethnicity and gender parity were less important than the actual interaction with the consenter, including their flexibility, listening skills, and ability to make the patient feel empowered. For research in general, the idea of contributing to the “greater good” emerged as a powerful motivation to participate. An emphasis on this, as well as well-trained consenters, may help studies attract more participants.

Note: This abstract was not presented at the conference.

Citation Format: Ellen Rippberger, Noe Chavez, Tanya Chavez, Christine Thai, Angelica Sanchez, Angela Wong, Karen Herold, Alan Nenez, Krista Rounds, Victoria Seewaldt. Factors influencing women's attitudes toward participation in breast cancer clinical research [abstract]. In: Proceedings of the Eleventh AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2018 Nov 2-5; New Orleans, LA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2020;29(6 Suppl):Abstract nr A086.