Assessing the Awareness of and Willingness to Participate in Cancer Clinical Trials Among Immigrant Latinos

Abstract

Objective There is a paucity of data on determinants of clinical trial participation in the growing and diverse US Latino population. We describe correlates of awareness of and willingness to participate in clinical trials among Central and South American Latinos using safety net clinics. Methods We conducted an interviewer administered, Spanish language cross-sectional survey (n=944). Logistic regression was used to assess effects of health information sources and psychosocial variables on awareness of clinical trials and intention to participate in clinical trials. Results While only 48% knew what a clinical trial was, when explained, 65% indicated a willingness to participate in a trial. Providers were the most common source of general health information. Use of Internet for health information (OR = 2.33, 95% CI 1.63, 3.34, p = .001), trust in health information (OR = 1.33, 1.12, 1.58 for each one unit increase, p = .001) and higher education each independently increased the odds of clinical trial awareness, but obtaining information from providers did not. Contacting the Cancer Information Service (OR = 2.49, 95% CI 1.01, 6.14, p = .05) and psychosocial factors (e.g., greater worry, higher self-efficacy and trust in information) were each independently associated with intent to join a clinical trial but demographic factors were not. Conclusions Several information channels, including the Internet and telephone call centers appear to be effective in conveying information about clinical trials. While providers were cited as the most common source of health information, this source was not associated with clinical trial knowledge or intent to participate in trials suggesting a missed opportunity for communication to this immigrant Latino population.

Disparities in knowledge and willingness to donate research biospecimens: a mixed-methods study in an underserved urban community

“…The literature cites many of the barriers about which researchers conducting biospecimen research should be cognizant: fear, the burden associated with trial participation (i.e., time commitment, transportation, family considerations), lack of physician referral, lack of culturally and linguistically appropriate education about clinical trials, exclusion by age restriction, exclusion by comorbidities, and providers' methods of presenting information about a trial or research study (Wallington et al 2012;Ford et al 2008;Schmotzer 2012). Results from our focus groups and survey suggest that among African-Americans knowledge regarding biospecimens and information on how biospecimens are used in research might be the most important factors involved in potential research participants' decision-making process on whether to donate biospecimens.…”

“…Survey In keeping with our theoretical model, we designed the "Biospecimen Awareness and Education Survey" based on social factors (i.e., sociodemographics), previous research on biobanking, biospecimens, and clinical trials (Luque et al 2012;Wallington et al 2012) and pre-tested it among community members prior to administering it to study participants. Participants who had taken part in the focus groups were not eligible to participate in the surveys.…”

Motivators and barriers to Latinas' participation in clinical trials: The role of contextual factors

“…1,2 Although there has been research on factors affecting RCTs participation in minority populations, 7 only a few studies have specifically focused on Latinas. 12–15 …”

“…19 Predisposing (e.g. age, 13 knowledge 12 ) enabling (e.g. trust in health information, information self-efficacy, contacting the Cancer Information Service), 12 and need factors (e.g.…”

Considerations of Methodological Approaches in the Recruitment and Retention of Immigrant Participants

“…Today, immigrants and their children make up one sixth of the U.S. population which is projected to increase in the coming decade with many arriving as adults having minimal schooling, living in poverty, or lacking health insurance [1]. Research on immigrants show barriers to recruitment and ultimately retaining minority populations [2] at many levels (e.g., institutional, individual), including mistrust of medical research [3], economic burden [4], failure to meet eligibility criteria [5], and unawareness of available studies [6] or lack of knowledge regarding what is a research study [7]. Immigrants' hesitancy regarding research participation is also linked to sense of stigma around a specific disease (i.e., HIV/AIDS), fear of immigration authorities, and cultural norms [8].…”