Abstract P4-10-05: Engaging linguistically and ethnically diverse low income women in health research: A randomized controlled trial
Authors: Joseph G , Nickell A , Cohen E , Burke NJ , Colen S , Lawlor K , Guerra C , Stewart SL 
Published: February 2018

Background: Underserved breast cancer survivors are typically offered fewer opportunities to participate in cancer research. To address this disparity, a community based navigator program, Shanti's Margot Murphy Breast Cancer Program (Shanti) initiated a collaboration with UCSF researchers and BreastCancerTrials.org (BCT), a nonprofit clinical trials matching service to explore the potential role of a trusted community-based organization as a source of culturally appropriate education and access to clinical trial information. Through formative research, we developed the Health Research Engagement Intervention (HREI), a one-on-one navigator-client education session emphasizing the range of treatment and non-treatment quality-of-life and observational studies, conducted at a time when the participant is not in the initial crisis of diagnosis. The HREI ends by providing participants with an information card listing BCT and other organizations that provide information about health research for breast cancer patients and survivors.

Methods: We tested the HREI in a randomized controlled trial, comparing the HREI to simply providing the information card. Pre and post intervention surveys one month apart measured our primary outcome of health research information-seeking behavior. Secondary outcomes include health research knowledge, attitudes towards research participation, and health empowerment. All Shanti clients who spoke English, Cantonese or Spanish and had “low care navigation needs” (either completed treatment or no longer in the crisis of initial diagnosis and/or burdened by treatment protocols) were eligible.

Results: We recruited 133 Shanti Clients, including 59 who spoke English, 48 Cantonese, and 26 Spanish; 66 were randomized to the intervention arm and 67 to the control arm, and 130 completed both pre- and post-test surveys. Almost one-third of participants in both the intervention and control arms reported having talked to someone about health research or having called a telephone number or visited a website listed on the card (30% vs. 30%, p=0.94); a smaller proportion of participants confirmed that their information-seeking was related to the content of the educational materials (17% vs. 9%, p=0.22). On average the change from pre- to post-test in a 5-item knowledge score, adjusted for pre-test knowledge, was greater in the intervention group than in the control group (p=0.028), but the proportion of participants who were very confident that they could find health research information (had health empowerment) remained essentially unchanged in both study arms (intervention: 20% post vs. 21% pre, p=0.76; control: 25% post vs. 25% pre, p=1.00). Women were more likely to seek information if they had higher pre-test knowledge scores (odds ratio [OR]=3.5 per item, 95% confidence interval [CI] 1.5-8.4) or a greater increase in knowledge from pre- to post-test (OR=2.2 per item, 95% CI 1.1-4.7); there was no association between information-seeking and health empowerment (OR=0.6, 95% CI 0.2-2.5) or study arm (OR=1.6, 95% CI 0.5-4.9).

Conclusion: The HREI had a positive impact on knowledge of health research but did not significantly affect health empowerment or health research information-seeking behavior.

Citation Format: Joseph G, Nickell A, Cohen E, Burke NJ, Colen S, Lawlor K, Guerra C, Stewart SL. Engaging linguistically and ethnically diverse low income women in health research: A randomized controlled trial [abstract]. In: Proceedings of the 2017 San Antonio Breast Cancer Symposium; 2017 Dec 5-9; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2018;78(4 Suppl):Abstract nr P4-10-05.