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Cancer Health Literacy and Willingness to Participate in Cancer Research and Donate Bio-Specimens

Author

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  • Margarita Echeverri

    (College of Pharmacy, Xavier University of Louisiana; New Orleans, LA 70125, USA)

  • David Anderson

    (Department of Mathematics, Xavier University of Louisiana; New Orleans, LA 70125, USA)

  • Anna María Nápoles

    (National Institute on Minority Health and Health Disparities, Bethesda, MD 20892, USA)

  • Jacqueline M. Haas

    (Multicultural Community Advisory Board, New Orleans, LA 70118, USA)

  • Marc E. Johnson

    (African American, Cancer Community Advisory Board, Kenner, LA 70063, USA)

  • Friar Sergio A. Serrano

    (Latino Community Advisory Board, Hispanic Apostolate; Metairie, LA 70003, USA)

Abstract

Although it has been well documented that poor health literacy is associated with limited participation in cancer clinical trials, studies assessing the relationships between cancer health literacy (CHL) and participation in research among diverse populations are lacking. In this study, we examined the relationship between CHL and willingness to participate in cancer research and/or donate bio-specimens (WPRDB) among African Americans, Latinos, and Whites. Participants completed the Cancer Health Literacy Test and the Multidimensional Cancer Literacy Questionnaire. Total-scale and subscale scores, frequencies, means, and distributions were computed. Analyses of variance, the Bonferroni procedure, and the Holm method were used to examine significant differences among groups. Cronbach’s alphas estimated scales’ internal consistency reliability. Significant interactions were found between race/ethnicity, gender, and CHL on WPRDB scales and subscale scores, even after education and age were taken into account. Our study confirms that CHL plays an important role that should be considered and researched further. The majority of participants were more willing to participate in non-invasive research studies (surveys, interviews, and training) or collection of bio-specimens (saliva, check cells, urine, and blood) and in studies led by their own healthcare providers, and local hospitals and universities. However, participants were less willing to participate in more-invasive studies requiring them to take medications, undergo medical procedures or donate skin/tissues. We conclude that addressing low levels of CHL and using community-based participatory approaches to address the lack of knowledge and trust about cancer research among diverse populations may increase not only their willingness to participate in research and donate bio-specimens, but may also have a positive effect on actual participation rates.

Suggested Citation

  • Margarita Echeverri & David Anderson & Anna María Nápoles & Jacqueline M. Haas & Marc E. Johnson & Friar Sergio A. Serrano, 2018. "Cancer Health Literacy and Willingness to Participate in Cancer Research and Donate Bio-Specimens," IJERPH, MDPI, vol. 15(10), pages 1-18, September.
    • Handle: RePEc:gam:jijerp:v:15:y:2018:i:10:p:2091-:d:171703
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    References listed on IDEAS

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    1. Margaret M. Byrne & Stacey L. Tannenbaum & Stefan Glück & Judith Hurley & Michael Antoni, 2014. "Participation in Cancer Clinical Trials," Medical Decision Making, , vol. 34(1), pages 116-126, January.
    2. George, S. & Duran, N. & Norris, K., 2014. "A systematic review of barriers and facilitators to minority research participation among African Americans, Latinos, Asian Americans, and Pacific Islanders," American Journal of Public Health, American Public Health Association, vol. 104(2), pages 16-31.
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    Cited by:

    1. Margarita Echeverri & David Anderson & Jacqueline M. Haas & Marc E. Johnson & Friar Sergio A. Serrano & Anna María Nápoles, 2020. "Testing the Preliminary Validity of a Multidimensional Framework for Studying the Effects of Cancer Health Literacy on Cancer Screening Behaviors among Diverse Populations," IJERPH, MDPI, vol. 17(9), pages 1-20, April.
    2. Jennifer Dykema & Cameron P. Jones & Dana Garbarski & Mia Farias & Dorothy Farrar Edwards, 2022. "Exploring the Relationship between Medical Research Literacy and Respondents’ Expressed Likelihood to Participate in a Clinical Trial," IJERPH, MDPI, vol. 19(22), pages 1-13, November.

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