Patient perspectives on barriers and facilitators related to the recruitment of Hispanic/Latinx cancer patients as participants in clinical trials research

Bryan Velez de Villa

doi:10.17918/00001541

Background: Historically, Hispanic/Latinx (H/L) people in the United States (US) have not participated in clinical research trials (8%) in the same numbers as other ethnicities. This is concerning when considering that H/L make up about 18% of the US population and are among the most affected by cancer. Given that the H/L population of New York City (NYC) is among the largest in the country, there is also a large number of H/L cancer patients within it. This study aims to determine what barriers and facilitators to recruitment exist for H/L cancer patients in NYC. Methods: A descriptive exploratory design was used to answer the research questions using mixed methods for data collection and analysis. The combination of qualitative (i.e., in depth recorded phone interviews) and quantitative methods (i.e., self-administered survey online) allowed for the collection of detailed and comprehensive information from the participants about feelings, perspective and experiences as well as permitted an analysis of associations between personal factors, including sociodemographics as well as their ability to make decisions. Participants (n=24) were recruited from H/L community centers in the boroughs of Queens and Manhattan. Male and female H/L cancer patients living in NYC were eligible for recruitment. These participants had to be above 18 years of age and have been diagnosed with cancer at one point in their lives. Once recruited, participants were given an online survey to complete followed by a phone interview to gather in depth perspectives from each participant. Results: The study participants identified three distinct barriers to recruitment: Preconceived Notions, Lack of Support, and Inconveniences. Participants also identified sub-themes contributing to the lack of H/L patient participation that fell into each of these three categories and reinforced that barriers exist. In addition to the perceived barriers, participants suggested ways in which enrollment among the H/L cancer community could be increased. These identified solutions categorized as facilitators were: Spanish Language availability, benefits of participation, education, and support. Each of these facilitators were linked to perceived barriers and were suggested as solutions to overcoming them. Conclusions: This study confirmed that barriers to enrollment of H/L cancer patients into clinical trials indeed exist and that the H/L community is aware of them. Based on these barriers, H/L participants believe that there are ways to increase enrollment and solve the issues preventing cancer patients in this community from enrolling. Beyond these proposed facilitators, sociocultural, regional, and country of origin-specific beliefs should be taken into account when attempting to overcome the hurdle of low enrollment among H/L cancer patients around the country. Barriers and facilitators identified in NYC may not be the same in other parts of the country. Further research is necessary to solve these complex issues but this study provides valuable insight and can be used as a platform for future work.

Patient perspectives on barriers and facilitators related to the recruitment of Hispanic/Latinx cancer patients as participants in clinical trials research

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Patient perspectives on barriers and facilitators related to the recruitment of Hispanic/Latinx cancer patients as participants in clinical trials research

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