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Open Access 01-10-2010 | Original Research

Pre-counseling Education for Low Literacy Women at Risk of Hereditary Breast and Ovarian Cancer (HBOC): Patient Experiences Using the Cancer Risk Education Intervention Tool (CREdIT)

Authors: Galen Joseph, Mary S. Beattie, Robin Lee, Dejana Braithwaite, Carolina Wilcox, Maya Metrikin, Kate Lamvik, Judith Luce

Published in: Journal of Genetic Counseling | Issue 5/2010

Abstract

The Cancer Risk Education Intervention Tool (CREdIT) is a computer-based (non-interactive) slide presentation designed to educate low-literacy, and ethnically and racially diverse public hospital patients at risk of Hereditary Breast and Ovarian Cancer (HBOC) about genetics. To qualitatively evaluate participants’ experience with and perceptions of a genetic education program as an adjunct to genetic counseling, we conducted direct observations of the intervention, semi-structured in person interviews with 11 women who viewed CREdIT, and post-counseling questionnaires with the two participating genetic counselors. Five themes emerged from the analysis of interviews: (1) genetic counseling and testing for breast/ovarian cancer was a new concept; (2) CREdIT’s story format was particularly appealing; (3) changes in participants’ perceived risk for breast cancer varied; (4) some misunderstandings about individual risk and heredity persisted after CREdIT and counseling; (5) the context for viewing CREdIT shaped responses to the presentation. Observations demonstrated ways to make the information provided in CREdIT and by genetic counselors more consistent. In a post-session counselor questionnaire, counselors’ rating of the patient’s preparedness before the session was significantly higher for patients who viewed CREdIT prior to their appointments than for other patients. This novel educational tool fills a gap in HBOC education by tailoring information to women of lower literacy and diverse ethnic/racial backgrounds. The tool was well received by interview participants and counselors alike. Further study is needed to examine the varied effects of CREdIT on risk perception. In addition, the implementation of CREdIT in diverse clinical settings and the cultural adaptation of CREdIT to specific populations reflect important areas for future work.

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Ad Hoc Committee on Health Literacy for the Council on Scientific Affairs, American Medical Association. (1999). Health literacy: report of the council on scientific affairs. JAMA, 281, 552–557.CrossRef

Armstrong, K., Micco, E., Carney, A., Stopfer, J., & Putt, M. (2005). Racial differences in the use of BRCA1/2 testing among women with a family history of breast or ovarian cancer. JAMA, 293, 1729–36.PubMedCrossRef

Axilbund, J. E., Hamby, L. A., Thompson, D. B., Olsen, S. J., & Griffin, C. A. (2005). Assessment of the use and feasibility of video to supplement the genetic counseling process: a cancer genetic counseling perspective. J Genet Couns, 14(3), 235–243.PubMedCrossRef

Barlow-Stewart, K., Yeo, S. S., Meiser, B., Goldstein, D., Tucker, K., & Eisenbruch, M. (2006). Toward cultural competence in cancer genetic counseling and genetics education: lessons learned from Chinese-Australians. Genet Med, 8(1), 24–32.PubMedCrossRef

Baty, B. J., Kinney, A. Y., & Ellis, S. M. (2003). Developing culturally sensitive cancer genetics communication aids for African Americans. Am J Med Genet A, 118, 146–55.CrossRef

Berg, B. (1995). Qualitative research methods for the social sciences (2nd ed.). Boston: Allyn and Bacon.

Charles, S., Kessler, L., Stopfer, J. E., Domchek, S., & Halbert, C. H. (2006). Satisfaction with genetic counseling for BRCA1 and BRCA2 mutations among African American women. Patient Educ Couns, 63(1–2), 196–204.PubMedCrossRef

Cull, A., Miller, H., Porterfield, T., Mackay, J., Anderson, E. D., Steel, C. M., et al. (1998). The use of videotaped information in cancer genetic counselling: a randomized evaluation study. Br J Cancer, 77(5), 830–837.PubMedCrossRefPubMedCentral

Davis, T. C., Holcombe, R. F., Berkel, H. J., Pramanik, S., & Divers, S. G. (1998). Informed consent for clinical trials: a comparative study of standard versus simplified forms. J Natl Cancer Inst, 90(9), 668–674.PubMedCrossRef

Davis, T. C., Williams, M. V., Branch, W. T., & Green, K. W. (1999). In B. Whaley (Ed.), Explaining illness to patients with limited literacy. Explaining illness: research, theory, and strategies for comprehension. Mahway: Lawrence Erlbaum Associates, Inc.

Doak, C. C., Doak, L. G., Friedell, G. H., & Meade, C. D. (1998). Improving comprehension for cancer patients with low literacy skills: strategies for clinicians. CA Cancer J Clin, 48(3), 151–162.PubMedCrossRef

Edwards, T. A., Thompson, H. S., Kwate, N. O., Brown, K., McGovern, M. M., Forman, A., et al. (2008). Association between temporal orientation and attitudes about BRCA1/2 testing among women of African descent with family histories of breast cancer. Patient Educ Couns, 72(2), 276–282.PubMedCrossRefPubMedCentral

Emerson, R. M., Fretz, R., & Shaw, L. L. (1995). Writing ethnographic fieldnotes. Chicago: University of Chicago Press.CrossRef

Fetterman, D. (1998). Ethnography: step by step (2nd ed.). Thousand Oaks: Sage.

Frank, T. S., Deffenbaugh, A. M., Reid, J. E., Hulick, M., Ward, B. E., Lingenfelter, B., et al. (2002). Clinical characteristics of individuals with germline mutations in BRCA1 and BRCA2: analysis of 10, 000 individuals. J Clin Oncol, 20(6), 1480–1490.PubMedCrossRef

Green, M. J., Peterson, S. K., Baker, M. W., Harper, G. R., Friedman, L. C., Rubinstein, W. S., et al. (2004). Effect of a computer-based decision aid on knowledge, perceptions, and intentions about genetic testing for breast cancer susceptibility: a randomized controlled trial. JAMA, 292(4), 442–452.PubMedCrossRefPubMedCentral

Halbert, C. H., Kessler, L. J., & Mitchell, E. (2005). Genetic testing for inherited breast cancer risk in African Americans. Cancer Invest, 23(4), 285–295.PubMedCrossRef

Hall, M. J., & Olopade, O. I. (2006). Disparities in genetic testing: thinking outside the BRCA box. J Clin Oncol, 24(14), 2197–2203.PubMedCrossRef

Honda, K. (2003). Who gets the information about genetic testing for cancer risk? the role of race/ethnicity, immigration status, and primary care clinicians. Clin Genet, 64(2), 131–136.PubMedCrossRef

Healthwise (2007) Ovarian cancer: Should I have my ovaries removed to prevent ovarian cancer? Accessed January 14, 2010. https://doi.org/www.healthwise.net/cochranedecisionaid/Content/StdDocument.aspx?DOCHWID=zx3060

Hughes, C., Fasaye, G. A., LaSalle, V. H., & Finch, C. (2003). Sociocultural influences on participation in genetic risk assessment and testing among African American women. Patient Educ Couns, 51(2), 107–114.PubMedCrossRef

Huo, D., & Olopade, O. I. (2007). Genetic testing in diverse populations: are researchers doing enough to get out the correct message? JAMA, 298(24), 2910–2911.PubMedCrossRef

Kauff, N. D., Satagopan, J. M., Robson, M. E., Scheuer, L., Hensley, M., Hudis, C. A., et al. (2002). Risk-reducing salpingo-oophorectomy in women with a BRCA1 or BRCA2 mutation. N Engl J Med, 346(21), 1609–1615.PubMedCrossRef

Lee, R., Beattie, M., Crawford, B., Mak, J., Stewart, N., Komaromy, M., et al. (2005). Recruitment, genetic counseling, and BRCA testing for underserved women at a public hospital. Genet Test, 9(4), 306–312.PubMedCrossRef

Lerman, C., Biesecker, B., Benkendorf, J. L., Kerner, J., Gomez-Caminero, A., Hughes, C., et al. (1997). Controlled trial of pretest education approaches to enhance informed decision-making for BRCA1 gene testing. J Natl Cancer Inst, 89(2), 148–157.PubMedCrossRef

Lubitz, R. J., Komaromy, M., Crawford, B., Beattie, M., Lee, R., Luce, J., et al. (2007). Development and pilot evaluation of novel genetic educational materials designed for an underserved patient population. Genet Test, 11(3), 276–290.PubMedCrossRef

McGee, G., & Malik, C. (1999). Review of: Green MJ, Fost N. Breast cancer risk and genetic testing. JAMA, 281, 1652.CrossRef

Meijers-Heijboer, H., van Geel, B., van Putten, W. L., Henzen-Logmans, S. C., Seynaeve, C., Menke-Pluymers, M. B., et al. (2001). Breast cancer after prophylactic bilateral mastectomy in women with a BRCA1 or BRCA2 mutation. N Engl J Med, 345(3), 159–164.PubMedCrossRef

Meilleur, K. G., & Littleton-Kearney, M. T. (2009). Interventions to improve patient education regarding multifactorial genetic conditions: a systematic review. Am J Med Genet A, 149A(4), 819–830.PubMedCrossRefPubMedCentral

Morgan, D., Sylvester, H., Lucas, F. L., & Miesfeldt, S. (2009). Cancer prevention and screening practices among women at risk for hereditary breast and ovarian cancer after genetic counseling in the community setting. Fam Cancer, 8(4), 277–287.PubMedCrossRef

Pawson, R., Greenhalgh, T., Harvey, G., & Walshe, K. (2005). Realist review—a new method of systematic review designed for complex policy interventions. J Health Serv Res Policy, 10(Suppl 1), 21–34.PubMedCrossRef

Peters, N., Rose, A., & Armstrong, K. (2004). The association between race and attitudes about predictive genetic testing. Cancer Epidemiol Biomark Prev, 13(3), 361–365.

Ponce, N. A., Afable-Munsuz, A., & Nordyke, R. J. (2007). Conceptualising the impact of genetic testing on cancer disparities in the USA. Int J Healthc Technol Manage, 8(5), 536–548.CrossRef

Ramirez, A. G., Aparicio-Ting, F. E., de Majors, S. S., & Miller, A. R. (2006). Interest, awareness, and perceptions of genetic testing among Hispanic family members of breast cancer survivors. Ethn Dis, 16(2), 398–403.PubMed

Rebbeck, T. R., Lynch, H. T., Neuhausen, S. L., Narod, S. A., Van’t Veer, L., Garber, J. E., et al. (2002). Prophylactic oophorectomy in carriers of BRCA1 or BRCA2 mutations. N Engl J Med, 346(21), 1616–1622.PubMedCrossRef

Rubinstein, W. S. (1999). Computer-based genetic counseling. JAMA, 282(18), 1719–1720.PubMedCrossRef

Schaefer, G. B., & Dunston, G. M. (2006). Health-care disparities in medical genetics. In D. Satcher & R. J. Paimes (Eds.), Multicultural medicine and health disparities (pp. 471–484). New York: McGraw-Hill.

Schillinger, D., Grumbach, K., Piette, J., Wang, F., Osmond, D., Daher, C., et al. (2002). Association of health literacy with diabetes outcomes. JAMA, 288(4), 475–482.PubMedCrossRef

Singer, E., Antonucci, T., & Van Hoewyk, J. (2004). Racial and ethnic variations in knowledge and attitudes about genetic testing. Genet Test, 8(1), 31–43.PubMedCrossRef

Strauss, A. (1987). Qualitative Analysis for Social Scientists. New York: Cambridge University Press.CrossRef

Thomas, S. B., Fine, M. J., & Ibrahim, S. A. (2004). Health disparities: the importance of culture and health communication. Am J Public Health, 94(12), 2050.PubMedCrossRefPubMedCentral

Thompson, H. S., Valdimarsdottir, H. B., Jandorf, L., & Redd, W. (2003). Perceived disadvantages and concerns about abuses of genetic testing for cancer risk: differences across African American, Latina and Caucasian women. Patient Educ Couns, 51(3), 217–227.PubMedCrossRef

US DHHS. (2000). Healthy People 2010. 2nd ed. Understanding and Improving Health and Objectives for Improving Health. 2 vols. Washington, DC: U.S. Government Printing Office.

Vadaparampil, S. T., Wideroff, L., Breen, N., & Trapido, E. (2006). The impact of acculturation on awareness of genetic testing for increased cancer risk among Hispanics in the year 2000 National Health Interview Survey. Cancer Epidemiol Biomark Prev, 15(4), 618–623.CrossRef

Wang, C., Gonzalez, R., Milliron, K. J., Strecher, V. J., & Merajver, S. D. (2005). Genetic counseling for BRCA1/2: a randomized controlled trial of two strategies to facilitate the education and counseling process. Am J Med Genet A, 134A(1), 66–73.PubMedCrossRef

Warner, E., Goel, V., Ondrusek, N., Thiel, E. C., Lavina, H., Lickley, A., et al. (1999). Pilot study of an information aid for women with a family history of breast cancer. Health Expect, 2(2), 118–128.PubMedCrossRefPubMedCentral

Warner, E., Carroll, J., Heisey, R., Goel, V., Meschino, W., Lickley, H., et al. (2003). Educating women about breast cancer. An intervention for women with a family history of breast cancer. Can Fam Physician, 49(1), 56–63.PubMedPubMedCentral

Weitzman, E. A. (1999). Analyzing qualitative data with computer software. Health Serv Res, 34(5 Pt 2), 1241–1263.PubMedPubMedCentral

Weitzman, E. A., & Miles, M. B. (1995). Computer programs for qualitative data analysis: a software sourcebook. Thousand Oaks: Sage.

Williams, M. V., Parker, R. M., Baker, D. W., Parikh, N. S., Pitkin, K., Coates, W. C., et al. (1995). Inadequate functional health literacy among patients at two public hospitals. JAMA, 274(21), 1677–1682.PubMedCrossRef

Zimmerman, R. K., Tabbarah, M., Nowalk, M. P., Raymund, M., Jewell, I. K., Wilson, S. A., et al. (2006). Racial differences in beliefs about genetic screening among patients at inner-city neighborhood health centers. J Natl Med Assoc, 98(3), 370–377.PubMedPubMedCentral

Title: Pre-counseling Education for Low Literacy Women at Risk of Hereditary Breast and Ovarian Cancer (HBOC): Patient Experiences Using the Cancer Risk Education Intervention Tool (CREdIT)
Authors: Galen Joseph
Mary S. Beattie
Robin Lee
Dejana Braithwaite
Carolina Wilcox
Maya Metrikin
Kate Lamvik
Judith Luce
Publication date: 01-10-2010
Publisher: Springer US
Published in: Journal of Genetic Counseling / Issue 5/2010
Print ISSN: 1059-7700
Electronic ISSN: 1573-3599
DOI: https://doi.org/10.1007/s10897-010-9303-3

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Pre-counseling Education for Low Literacy Women at Risk of Hereditary Breast and Ovarian Cancer (HBOC): Patient Experiences Using the Cancer Risk Education Intervention Tool (CREdIT)

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