The Role of Health Literacy on African American and Hispanic/Latino Perspectives on Cancer Clinical Trials
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Although cancer clinical trials are important for discovering lifesaving therapies, participation remains low among racial/ethnic minorities, and little research explores the role of health literacy in racial/ethnic minority perceptions of cancer clinical trials (CCTs). Five focus groups (n = 50) with African American and Hispanic participants explored CCT perceptions using a multidimensional health literacy framework. We found poor scientific literacy including misconceptions of scientific information, perceptions of clinical trials as uncertain and fear; limited civic literacy around topics of trust, perceptions of participants as guinea pigs, and concerns about of IRB protections; and cultural literacy challenges regarding the importance of home remedies for health, use of native language, and the importance of race/ethnicity matching to health care professionals. Results highlight the importance of attending to scientific literacy, cultural literacy, and civic literacy. Future educational interventions regarding cancer clinical trials should address the importance of health literacy in understanding cancer clinical trial decision making.
- Siegel R, Ward E, Brawley O, Jemal A (2011) Cancer statistics, 2011: the impact of eliminating socioeconomic and racial disparities on premature cancer deaths. CA Cancer J Clin 61(4):212–236 CrossRef
- Center for Information and Study on Clinical Research Participation (2007) African Americans and Clinical Research. http://ciscrp.org/patient/educ_materials/brochures/ciscrp_AA_brochure_web.pdf. Accessed July 2011.
- National Cancer Institute (2008) Should i participate in a clinical trial? http://www.cancer.gov/clinicaltrials/education/should-I-take-part. Accessed July 2011.
- Ford LG, Minasian LM, McCaskill-Stevens W, Pisano ED, Sullivan D, Smith RA (2003) Prevention and early detection clinical trials: opportunities for primary care providers and their patients. CA Cancer J Clin 53:82–101 CrossRef
- U.S. National Institutes of Health (2001) Understanding clinical trials. http://clinicaltrials.gov/ct2/info/understand#Q06. Accessed 24 July 2011.
- National Cancer Institute (2002) Cancer clinical trials: the basic workbook. National Cancer Institute, Bethesda, MD
- Newman LA, Kim Roff N, Weinberg AD (2008) Cancer clinical trials accrual: missed opportunities to address disparities and missed opportunities to improve outcomes for all. Ann Surg Oncol 15(7):1818–1819 CrossRef
- Murthy VH, Krumholz HM, Gross CP (2004) Participation in cancer clinical trials: race-, sex-, and age-based disparities. JAMA 291:2720–2726 CrossRef
- U.S. National Institutes of Health (1994) NIH Guidelines on the inclusion of women and minorities as subjects of clinical research. http://grants.nih.gov/grants/guide/notice-files/not94-100.html. Accessed 24 July 2011.
- Sadler GR, Gonzalez J, Mumman M, Cullen L, LaHousse SF, Malcarne V, Conde V, Riley N (2010) Adapting a program to inform African American and Hispanic women about cancer clinical trials. J Canc Educ 25:142–145 CrossRef
- Bieniasz ME, Underwood D, Bailey J, Ruffin MT (2003) Women’s feedback on chemopreventive trial for cervical dysplasia. App Nurs Res 16(1):22–28 CrossRef
- Corbie-Smith G, Thomas SB, Williams MV, Moody-Ayers S (1999) Attitudes and beliefs of African Americans toward participation in medical research. J Gen Intern Med 14:537–546 CrossRef
- Jones JM, Nyhof-Young J, Moric J, Friedman A, Wells W, Catton P (2006) Identifying motivations and barriers to patient participation in clinical trials. J Canc Educ 21:237–242 CrossRef
- Wright JR, Whelan TJ, Schiff C, Dubois S, Crooks D, Haines PT, DeRosa D, Roberts RS, Gafni A, Pritchard K, Levine MN (2004) Why cancer patients enter randomized clinical trials: exploring the factors that influence their decision. J Clin Oncol 22:4312–4318 CrossRef
- Nielsen-Bohlman L, Institute of Medicine (U.S.) Committee on Health Literacy (2004) Health literacy: a prescription to end confusion. National Academies Press, Washington, DC
- Zarcadoolas C, Pleasant A, Greer DS (2005) Understanding health literacy: an expanded model. Health Promot Int 20(2):195–203 CrossRef
- Baker DW (2006) The meaning and measure of health literacy. J Gen Intern Med 21:878–883 CrossRef
- National Science Board ( 2004) Science and engineering indicators 2004. http://www.nsf.gov/statistics/seind04/pdf/c07.pdf. Accessed July 2011.
- Gansler T, Henley SJ, Stein K, Nehl EJ, Smigal C, Slaughter E (2005) Sociodemographic determinants of cancer treatment health literacy. Cancer 104:653–660 CrossRef
- Zarcadoolas C, Greer DS, Pleasant A (2006) Advancing health literacy: a framework for understanding and action. Wiley, San Francisco, CA
- Krieger JL, Parrott RL, Nussbaum JF (2011) Metaphor use and health literacy: a pilot study of strategies to explain randomization in cancer clinical trials. J Health Commun 16(1):3–16 CrossRef
- Paskett ED, Katz ML, Degraffinreid CR, Tatum CM (2009) Participation in cancer clinical trials. In: Miller SM (ed) Handbook of cancer control and behavioral science: a resource for researchers, practitioners, and policy makers. American Psychological Association, Washington, DC, pp 103–112
- Shaw SJ, Huebner C, Armin J, Orzech K, Vivian J (2009) The role of culture in health literacy and chronic disease screening and management. J Immigr Minor Health 11(6):460–467 CrossRef
- Berkman ND, Davis TC, McCormack L (2010) Health literacy: what is it? J Health Commun 15(Suppl):9–19 CrossRef
- Scientific Software Development (2006) ATLAS.ti. version 5.2. Scientific Software Development, Berlin
- Crabtree BF, Miller WL (1999) Doing qualitative research, 2nd edn. Sage Publications, Thousand Oaks
- The Role of Health Literacy on African American and Hispanic/Latino Perspectives on Cancer Clinical Trials
Journal of Cancer Education
Volume 27, Issue 2 , pp 299-305
- Cover Date
- Print ISSN
- Online ISSN
- Additional Links
- Clinical trials
- African Americans
- Health literacy
- Focus group
- Industry Sectors
- Author Affiliations
- 1. Department of Health Education and Behavioral Science, UMDNJ–School of Public Health, 683 Hoes Lane, Piscataway, NJ, 08854, USA
- 2. The Cancer Institute of New Jersey, UMDNJ-Robert Wood Johnson Medical School, 195 Little Albany Street, New Brunswick, NJ, 08903, USA
- 3. Department of Family Medicine and Community Health, UMDNJ-Robert Wood Johnson Medical School, 195 Little Albany Street, New Brunswick, NJ, 08903, USA