Participant-Centered Strategies for Overcoming Barriers to Biospecimen Collection among Spanish-Speaking Latina Breast Cancer Survivors

Abstract

Background: Latinos are underrepresented in biomedical research, particularly biomarker research, yet they constitute the nation's largest ethnic/racial minority. Optimal methods for obtaining biospecimens for biomarker research among Latinos need to be identified. To minimize barriers and enhance participation, this study developed and tested tailored strategies for collecting biomarkers of chronic stress and premature aging among Spanishspeaking Latina breast cancer survivors.Methods: This study used a community-based participatory approach and selected hair and saliva as noninvasive biospecimens to assess telomere length, the cortisol awakening response (CAR), and hair cortisol concentration. We developed bilingual multimedia instructional materials, and community health workers assisted in collections. Telephone surveys assessed willingness to participate in future studies, barriers to sample collection, and recommendations for improving the strategies.Results: A total of 103 participants were recruited over 18 months from two rural sites in California, and 88 were retained at 6-month follow-up. At baseline, rates of donating salivary DNA for telomere length measurement, saliva for CAR analysis, and hair for cortisol concentration were 98%, 89%, and 52%, respectively. At follow-up, rates were 83%, 76%, and 55%, respectively. The majority of participants reported being very willing to provide hair (72%) or saliva (74%) for future studies.Conclusions: Our results support the feasibility of including minorities in biomedical research. We report excellent rates of saliva collection when community partners are engaged in the process, and when patient-centered and culturally tailored recruitment methods are implemented.Impact: The development of methods to facilitate the inclusion of minorities in biomedical research is critical to eliminate racial/ ethnic health disparities.

Guidelines for Designing and Evaluating Feasibility Pilot Studies

“…For example, to facilitate compliance with a complex biospecimen collection protocol, a video together with in-person support and instruction were provided to Spanish-speaking Latinas. 12 Are needed Data Available From Administrative Records and How Are Variables Defined and Scored?…”

Perceptions of patients with early stage breast cancer toward research biopsies

“…Despite this limitation, it is concerning that non‐White participants generally indicated less willingness to consider research blood draws and biopsy procedures than White participants, a finding that has been previously reported 9 . This pattern speaks to the need for dedicated and culturally sensitive efforts to overcome mistrust in the medical system and other barriers that may stem from historic and ongoing injustices 13‐15 . Replicating our survey in a more diverse patient population may provide additional actionable insights.…”

“…9 This pattern speaks to the need for dedicated and culturally sensitive efforts to overcome mistrust in the medical system and other barriers that may stem from historic and ongoing injustices. [13][14][15] Replicating our survey in a more diverse patient population may provide additional actionable insights.…”

Addressing Challenges in Recruiting Diverse Populations for Research

“…Corbie-Smith (2004) described African Americans' distrust in the transparency of study protocols and feared that the risks were greater than was disclosed. Strategies to address these psychological barriers require open bidirectional, nonambiguous conversations about the biospecimens' collected methods, purpose, and use (Samayoa et al, 2020). During recruitment, active listening and responsiveness to questions about the biomarker collection and study procedures may facilitate participation through education and building trustworthiness (Samayoa et al, 2020).…”

“…Strategies to address these psychological barriers require open bidirectional, nonambiguous conversations about the biospecimens' collected methods, purpose, and use (Samayoa et al, 2020). During recruitment, active listening and responsiveness to questions about the biomarker collection and study procedures may facilitate participation through education and building trustworthiness (Samayoa et al, 2020). We attribute our success in obtaining biorepository consent to opening the conversation with participants about past exploitations.…”