Retaining Hispanics: Lessons From the Hispanic Community Health Study/Study of Latinos

Abstract

We aimed to examine the retention of Hispanics/Latinos participating in the Hispanic Community Health Study/Study of Latinos (HCHS/SOL), a prospective cohort study of 16,415 adults in 4 US cities who were enrolled between 2008 and 2011. We summarized retention strategies and examined contact, response, and participation rates over 5 years of annual follow-up interviews. We then evaluated motivations for participation and satisfaction with retention efforts among participants who completed a second in-person interview approximately 6 years after their baseline interview. Finally, we conducted logistic regression analyses estimating associations of demographic, health, and interview characteristics at study visit 1 (baseline) with participation, high motivation, and high satisfaction at visit 2. Across 5 years, the HCHS/SOL maintained contact, response, and participation rates over 80%. The most difficult Hispanic/Latino populations to retain included young, single, US-born males with less than a high school education. At visit 2, we found high rates of motivation and satisfaction. HCHS/SOL participants primarily sought to help their community and learn more about their health. High rates of retention of Hispanics/Latinos can be facilitated through the employment of bilingual/bicultural staff and the development of culturally tailored retention materials.

A Randomized Clinical Trial of Precision Prevention Materials IncorporatingMC1RGenetic Risk to Improve Skin Cancer Prevention Activities Among Hispanics

“…Despite our 69% consent rate (Fig. 1), having bilingual/bicultural staff, and providing Spanish language materials as recommended by previous studies (43), only 54% and 49% of participants returned the 3-and 9-month questionnaire, respectively. Participants enrolled at baseline who did not complete at least one follow-up survey were more likely to be younger, male, non-White, have lower levels of education and health literacy, have decreased belief that skin cancer prevention activities are effective, and have decreased perceived skin cancer risk and skin cancer worry, although specific predictors of questionnaire missingness differed according to MCR risk category and follow-up timepoint (Supplementary Table S3).…”

Hepatitis C infection and chronic kidney disease among Hispanics/Latinos

“…Furthermore, our analysis may have been subject to selection bias, as it only included participants that were present for visit 2 of the HCHS/SOL study, although previous work has suggested that those lost to follow-up were more likely to be male, US-born, and without a high school diploma than those who remained. [ 19 ] A further limitation is that HCHS/SOL is only representative of the communities from which participants were sampled. Although the four HCHS/SOL field centers recruited from states with some of the largest populations of Hispanics/Latinos in the country, [ 37 ] it remains a possibility that our results may not be generalizable to all US Hispanics/Latinos.…”

“…Approximately 6 years after completing visit 1, study participants were invited to complete a second clinical examination (visit 2; 2015–2017), during which these measures were collected again. [ 19 ] The retention rate of the study at visit 2 was high (81%), although some participants (n = 1,224) were administratively excluded from participation because they had relocated outside of the United States or moved more than 100 miles from the nearest study field center since visit 1. [ 19 ] In a prior investigation of retention in the HCHS/SOL study, 38% of visit 2 participants reported challenges to study participation, including family and work obligations and lack of residential stability; these factors likely contributed to loss to follow-up among those who did not complete visit 2.…”

Editorial: The Importance of Diversity in Precision Medicine Research

“…Inclusion of diverse groups is key to diversifying the pool from which precision medicine can be developed. Discerning factors that influence participation and incorporating these findings into inclusive ascertainment strategies are crucial; efforts must be made to understand ways in which diverse groups can be accessed and invited to participate, as well as to identify motivators and/or barriers affecting willingness to participate and to remain in studies (Perreira et al, 2020 ). Four publications in this Research Topic addressed the topic “development of culturally-appropriate consent and recruitment strategies for precision medicine research” and “barriers to participation in research (such as access to technology, genomic literacy, concerns for digital data privacy, and factors that impact time or means to participate in research).”…”