Skip to main content

Advertisement

SpringerLink
Log in

Genetic counseling content: How does it impact health behavior?

  • Published:
Journal of Behavioral Medicine Aims and scope Submit manuscript

Abstract

Women with hereditary breast-ovarian cancer face decisions about screening (transvaginal ultrasound, CA125, mammography, breast exams) and proactive (before cancer) or reactive (after cancer) surgery (oophorectomy, mastectomy). The content of genetic counseling and its relation to these key health behaviors is largely unexamined. Ashkenazi Jewish women (n = 78) were surveyed through the process of genetic testing and had audiorecorded counseling sessions available for Linguistic Inquiry and Word Count analysis. Proportions for participant and counselor cognitive and affective content during sessions were used as primary predictor variables in linear mixed models for change in intentions for screening and treatment and in self-reported screening. Cognitive and affective content were important predictors of behavior. Counselor cognitive content was associated with ovarian screening. An interaction effect also emerged for CA-125, such that counselor cognitive content plus participant cognitive content or counselor affective content were associated with more screening. Teasing out the factors in risk communication that impact decision-making are critical, and affect from a risk communicator can spur action, such as cancer screening.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Log in via an institution

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Institutional subscriptions

Similar content being viewed by others

References

  • Beattie, M. S., Copeland, K., Fehniger, J., Cheung, E., Joseph, G., Lee, R., et al. (2013). Genetic counseling, cancer screening, breast cancer characteristics, and general health among a diverse population of BRCA genetic testers. Journal of Health Care for the Poor and Underserved, 24, 1150–1166.

    Article  PubMed  Google Scholar 

  • Botkin, J. R., Smith, K. R., Croyle, R. T., Baty, B. J., Wylie, J. E., Dutson, D., et al. (2003). Genetic testing for a BRCA1 mutation: Prophylactic surgery and screening behavior in women 2 years post testing. American Journal of Medical Genetics, Part A, 118, 201–209.

    Article  Google Scholar 

  • Burke, W., Daly, M., Garber, J. E., Botkin, J. R., Kahn, M. E., Lynch, P., et al. (1997). Recommendations for follow-up care of individuals with an inherited prediposition to cancer II. BRCA1 and BRCA2. Journal of the American Medical Association, 277, 997–1003.

    Article  CAS  PubMed  Google Scholar 

  • Coughlin, S., King, J., Richards, T., & Ekwueme, D. (2005). Breast cancer screening and socioeconomic status—35 metropolitan areas, 2000 and 2002. Morbidity and Mortality Weekly Report, 59, 982–986.

    Google Scholar 

  • Dorval, M., Nogues, C., Berthet, P., Chiquette, J., Gauthier-Villars, M., Lasset, C., et al. (2011). Breast and ovarian cancer screening of non-carriers from BRCA1/2 mutation-positive families: 2-year follow-up of cohorts from France and Quebec. European Journal of Human Genetics, 19, 494–499.

    Article  PubMed Central  CAS  PubMed  Google Scholar 

  • Doughty Rice, C., Ruschman, J. G., Martin, L. J., Manders, J. B., & Miller, E. (2010). Retrospective comparison of patient outcomes after in-person and telephone results disclosure counseling for BRCA1/2 genetic testing. Familial Cancer, 9, 203–212.

    Article  PubMed  Google Scholar 

  • Easton, D. F., Ford, D., Bishop, T., & The Breast Cancer Linkage Consortium. (1995). Breast and ovarian cancer incidence in BRCA1-mutation carriers. American Journal of Human Genetics, 56, 265–271.

    PubMed Central  CAS  PubMed  Google Scholar 

  • Ellington, L., Baty, B. J., McDonald, J., Venne, V., Musters, A., Roter, D., et al. (2006). Exploring genetic counseling communication patterns: The role of teaching and counseling approaches. Journal of Genetic Counseling, 15, 179–189.

    Article  PubMed  Google Scholar 

  • Ellington, L., Roter, D., Dudley, W. N., Baty, B. J., Upchurch, R., Larson, S., et al. (2005). Communication analysis of BRCA1 genetic counseling. Journal of Genetic Counseling, 14, 337–386.

    Article  Google Scholar 

  • Finch, A., Beiner, M., Lubinski, J., Lynch, H. T., Moller, P., Rosen, B., … &Hereditary Ovarian Cancer Clinical Study Group. (2006). Salpingo-oophorectomy and the risk of ovarian, fallopian tube, and peritoneal cancers in women with a BRCA1 or BRCA2 Mutation. Journal of the American Medical Association, 296(2), 185–192.

  • Fitzgerald, M. G., MacDonald, D. J., Krainer, M., Hoover, I., O’Neil, E., Unsal, H., … & Haber, D. A. (1996). Germ-line BRCA1 mutations in Jewish and non-Jewish women with early-onset breast cancer. The New England Journal of Medicine, 334(3), 143–149.

  • Graves, K. D., Schmidt, J. E., & Andrykowski, M. A. (2005). Writing about September 11, 2001: The role of emotional intelligence and the social environment. Journal of Language and Social Psychology, 24, 285–299.

  • Halbert, C. H., Stopfer, J. E., McDonald, J., Weathers, B., Collier, A., Troxel, A. B., et al. (2011). Long-term reactions to genetic testing for BRCA1 and BRCA2 mutations: Does time heal women’s concerns? Journal of Clinical Oncology, 29, 4302–4306.

    Article  PubMed Central  PubMed  Google Scholar 

  • Hartmann, L. C., Schaid, D. J., Woods, J. E., Crotty, T. P., Myers, J. L., Arnold, P. G., … & Jenkins, R. B. et al. (1999). Efficacy of bilateral prophylactic mastectomy in women with a family history of breast cancer. New England Journal of Medicine, 340(2), 77–84.

  • Howard, A. F., Balneaves, L. G., & Bottorff, J. L. (2009). Women’s decision making about risk-reducing strategies in the context of hereditary breast and ovarian cancer: A systematic review. Journal of Genetic Counseling, 18, 578–597.

    Article  PubMed  Google Scholar 

  • Johnson, J. D. (1997). Cancer-related information seeking. Creeskill, NJ: Hampton Press Inc.

    Google Scholar 

  • Kahn, J. A., Slap, G. B., Bernstein, D. I., Tissot, A. M., Kollar, L. M., Hilliard, P. A., et al. (2007). Personal meaning of human papillomavirus and pap test results in adolescent and young adult women. Health Psychology, 26, 192–200.

    Article  PubMed  Google Scholar 

  • Kelly, K. M., Ellington, L., Schoenberg, N., Agarwal, P., Jackson, T., Dickinson, S., … Andrykowski, M. (2014). Linking genetic counseling content to short-term outcomes in individuals at elevated breast cancer risk. Journal of Genetic Counseling, 23, 838–848.

  • Kelly, K., Leventhal, H., Andrykowski, M., Toppmeyer, D., Much, J., Dermody, J., … Scwalb, M. (2004a). The decision to test in women receiving genetic counseling for BRCA1 and BRCA2 mutations. Journal of Genetic Counseling, 13, 237–257.

    Article  PubMed  Google Scholar 

  • Kelly, K. M., Leventhal, H., Marvin, M., Toppmeyer, D., Much, J., Dermody, J., et al. (2004b). Subjective and objective risk of breast cancer in Ashkenazi Jewish individuals at risk for BRCA1/2 mutations. Genetic Testing, 8, 139–147.

    Article  CAS  PubMed  Google Scholar 

  • Kinney, A. Y., Simonsen, S. E., Baty, B. J., Mandal, D., Neuhausen, S. L., Seggar, K., et al. (2006). Risk reduction behaviors and provider communication following genetic counseling and BRCA1 mutation testing in an African American kindred. Journal of Genetic Counseling, 15, 293–305.

    Article  PubMed  Google Scholar 

  • Lerman, C., Hughes, C., Croyle, R. T., Main, D., Durham, C., Snyder, C., et al. (2000). Prophylactic surgery decisions and surveillance practices one year following BRCA1/2 testing. Preventive Medicine, 31, 75–80.

    Article  CAS  PubMed  Google Scholar 

  • Leventhal, H., Benyamini, Y., Brownlee, S., Diefenbach, M., Leventhal, E. A., & Patrick-Miller, L. (1997). Illness representation: Theoretical foundations. In J. Weinman & K. Petrie (Eds.), Perceptions of health and illness (pp. 19–45). London: Harwood.

    Google Scholar 

  • Leventhal, H., Brisette, I., & Leventhal, E. (2003). The common-sense model of self-regulation of health and illness. In L. D. Cameron & H. Leventhal (Eds.), The self-regulation of health and illness behaviour (pp. 42–65). London: Routledge.

    Google Scholar 

  • Loader, S., Shields, C. G., & Rowley, P. T. (2004). Impact of genetic testing for breast-ovarian cancer susceptibility. Genetic Testing, 8, 1–12.

    Article  PubMed  Google Scholar 

  • Lodder, L. N., Frets, P. G., Trijsburg, R. W., Meijers-Heijboer, E. J., Klijn, J. G., Seynaeve, C., et al. (2002). One year follow-up of women opting for presymptomatic testing for BRCA1 and BRCA2: Emotional impact of the test outcome and decisions on risk management (surveillance or prophylactic surgery). Breast Cancer Research and Treatment, 73, 97–112.

    Article  CAS  PubMed  Google Scholar 

  • Mannis, G. N., Fehniger, J. E., Creasman, J. S., Jacoby, V. L., & Beattie, M. S. (2013). Risk-reducing salpingo-oophorectomy and ovarian cancer screening in 1077 women after BRCA testing. Journal of the American Medical Association Internal Medicine, 173, 96–103.

    PubMed  Google Scholar 

  • Mehl, M., & Pennebaker, J. (2003). The sounds of social life: A psychometric analysis of students’ daily social environments and natural conversations. Journal of Personality and Social Psychology, 84, 857–870.

    Article  PubMed  Google Scholar 

  • Meiser, B., Butow, P. N., Barratt, A. L., Schnieden, V., Gattas, M., Kirk, J., et al. (2001). Long-term outcomes of genetic counseling in women at increased risk of developing hereditary breast cancer. Patient Education and Counseling, 44, 215–225.

    Article  CAS  PubMed  Google Scholar 

  • Miller, A. B., Baines, C. J., To, T., & Wall, C. (1992). Canadian National Breast Screening Study: 2. Breast cancer detection and death rates among women aged 50 to 59 years. Canadian Medical Association Journal, 147, 1477–1488.

    PubMed Central  CAS  PubMed  Google Scholar 

  • Miller, S. M., Roussi, P., Daly, M. B., Buzaglo, J. S., Sherman, K., Godwin, A. K., et al. (2005). Enhanced counseling for women undergoing BRCA1/2 testing: Impact on subsequent decision making about risk reduction behaviors. Health Education and Behavior, 32, 654–667.

    Article  PubMed  Google Scholar 

  • 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. Familial Cancer, 8, 277–287.

    Article  CAS  PubMed  Google Scholar 

  • Morris, K. T., Johnson, N., Krasikov, N., Allen, M., & Dorsey, P. (2001). Genetic counseling impacts decision for prophylactic surgery for patients perceived to be at high risk for breast cancer. American Journal of Surgery, 181, 431–433.

    Article  CAS  PubMed  Google Scholar 

  • Moyer, V. A., & US Preventive Services Task Force. (2014). Risk assessment, genetic counseling, and genetic testing for BRCA-related cancer in women: U.S. Preventive Services Task Force Recommendation Statement. Annals of Internal Medicine, 160(4), 271–281.

  • National Society of Genetic Counselors. (2004). Familial Cancer Risk Counseling Association: Standard Protocol. Retrieved 12/5/2008, from www.nsgc.org

  • Niederhoffer, K., & Pennebaker, J. (2002). Linguistic style matching in social interaction. Journal of Language and Social Psychology, 21, 337–360.

  • Nystrom, L., Andersson, I., Bjurstam, N., Frisell, J., Nordenskjold, B., & Rutqvist, L. E. (2002). Long-term effects of mammography screening: Updated overview of the Swedish randomised trials. Lancet, 359, 909–919.

    Article  PubMed  Google Scholar 

  • Obermaier, A., Youlden, D. R., Baade, P. D., & Janda, M. (2014). The impact of risk-reducing hysterectomy and bilateral salpingo-oophorectomy on survival in patients with a history of breast cancer—A population-based data linkage study. International Journal of Cancer, 134, 2211–2222.

    Article  Google Scholar 

  • Oddoux, C., Struewing, J. P., Clayton, C. M., Neuhausen, S., Brody, L. C., Kaback, M. M., … & Offit, K. (1996). The carrier frequency of the BRCA2 6174delT mutation among Ashkenazi Jewish individuals is approximately 1%. Nature Genetics, 14, 188–190.

  • Olivier, R. I., Lubsen-Brandsma, M. A., Verhoef, S., & van Beurden, M. (2006). CA125 and transvaginal ultrasound monitoring in high-risk women cannot prevent the diagnosis of advanced ovarian cancer. Gynecologic Oncology, 100, 20–26.

    Article  CAS  PubMed  Google Scholar 

  • O’Neill, S. C., Valdimarsdottir, H. B., Demarco, T. A., Peshkin, B. N., Graves, K. D., Brown, K., et al. (2010). BRCA1/2 test results impact risk management attitudes, intentions, and uptake. Breast Cancer Research and Treatment, 124, 755–764.

    Article  PubMed Central  PubMed  Google Scholar 

  • Pennebaker, J., & Francis, M. (2001). Linguistic Inquiry and Word Count. The Second Version: SLIWC. University of Texas at Austin.

    Google Scholar 

  • Pennebaker, J. F., Francis, M. E., & Booth, R. J. (2001). Linguistic inquiry and word count LIWC 2001. Mahway: Lawrence Erlbaum Associates.

    Google Scholar 

  • Peshkin, B. N., Schwartz, M. D., Isaacs, C., Hughes, C., Main, D., & Lerman, C. (2002). Utilization of breast cancer screening in a clinically based sample of women after BRCA1/2 testing. Cancer Epidemiology, Biomarkers and Prevention, 11, 1115–1118.

    PubMed  Google Scholar 

  • Ray, J. A., Loescher, L. J., & Brewer, M. (2005). Risk-reduction surgery decisions in high-risk women seen for genetic counseling. Journal of Genetic Counseling, 14, 473–484.

    Article  PubMed  Google Scholar 

  • Saadatmand, S., Tilanus-Linthorst, M. M., Rutgers, E. J., Hoogerbrugge, N., Oosterwijk, J. C., Tollenaar, R. A., ... de Koning, H. J. (2013). Cost-effectiveness of screening women with familial risk for breast cancer with magnetic resonance imaging. Journal of the National Cancer Institute, 105, 1314–1321.

  • Scheuer, L., Kauff, N., Robson, M., Kelly, B., Barakat, R., Satagopan, J., et al. (2002). Outcome of preventive surgery and screening for breast and ovarian cancer in BRCA mutation carriers. Journal of Clinical Oncology, 20, 1260–1268.

    Article  PubMed  Google Scholar 

  • Schwartz, M. D., Isaacs, C., Graves, K. D., Poggi, E., Peshkin, B. N., Gell, C., et al. (2012). Long-term outcomes of BRCA1/BRCA2 testing: Risk reduction and surveillance. Cancer, 118, 510–517.

    Article  PubMed Central  PubMed  Google Scholar 

  • Schwartz, M. D., Kaufman, E., Peshkin, B. N., Isaacs, C., Hughes, C., DeMarco, T., et al. (2003). Bilateral prophylactic oophorectomy and ovarian cancer screening following BRCA1/BRCA2 mutation testing. Journal of Clinical Oncology, 21, 4034–4041.

    Article  PubMed  Google Scholar 

  • Schwartz, M. D., Rimer, B. K., Daly, M., Sands, C., & Lerman, C. (1999). A randomized trial of breast cancer risk counseling: The impact on self-reported mammography use. American Journal of Public Health, 89, 924–926.

    Article  PubMed Central  CAS  PubMed  Google Scholar 

  • Tonin, P., Weber, B., Offit, K., Couch, F., Rebbeck, T. R., Neuhausen, S., et al. (1996). Frequency of recurrent BRCA1 and BRCA2 mutations in Ashkenazi Jewish breast cancer families. Nature Medicine, 2, 1179–1183.

    Article  CAS  PubMed  Google Scholar 

  • van Driel, C. M., Eltahir, Y., de Vries, J., Jaspers, J. P., Oosterwijk, J. C., Mourits, M. J., et al. (2014). Risk-reducing mastectomy in BRCA1/2 mutation carriers: Factors influencing uptake and timing. Maturitas, 77, 180–184.

    Article  PubMed  Google Scholar 

  • Vasen, H. F., Tesfay, E., Boonstra, H., Mourits, M. J., Rutgers, E., Verheyen, R., et al. (2005). Early detection of breast and ovarian cancer in families with BRCA mutations. European Journal of Cancer, 41, 549–554.

    Article  CAS  PubMed  Google Scholar 

  • Wainberg, S., & Husted, J. (2004). Utilization of screening and preventive surgery among unaffected carriers of a BRCA1 or BRCA2 gene mutation. Cancer Epidemiology, Biomarkers and Prevention, 13, 1989–1995.

    CAS  PubMed  Google Scholar 

Download references

Acknowledgments

This work was supported by the National Cancer Institute at the National Institutes of Health (R03 CA128459-01A2 Kelly, PI). We would like to acknowledge Jill Baran, MS, CGC and Monica Magee, MS, CGC for their work in recruiting and counseling patients for this study.

Conflict of interest

Kimberly M. Kelly, Lee Ellington, Nancy Schoenberg, Thomas Jackson, Stephanie Dickinson, Kyle Porter, Howard Leventhal and Michael Andrykowski declare that they have no conflict of interest.

Human and Animal Rights and Informed Consent

All procedures followed were in accordance with the ethical standards of the responsible committee on human experimentation (institutional and national) and with the Helsinki Declaration of 1975, as revised in 2000 (5). Informed consent was obtained from all patients for being included in the study.

Author information

Authors and Affiliations

  1. Mary Babb Randolph Cancer Center and School of Pharmacy, Health Science Center, West Virginia University, PO Box 9510, Morgantown, WV, 26506, USA

    Kimberly M. Kelly

  2. College of Nursing, University of Utah, Salt Lake City, UT, USA

    Lee Ellington

  3. Department of Behavioral Science, University of Kentucky, Lexington, KY, USA

    Nancy Schoenberg & Michael Andrykowski

  4. Department of Statistics, Indiana University, Bloomington, IN, USA

    Thomas Jackson & Stephanie Dickinson

  5. Center for Biostatistics, The Ohio State University, Columbus, OH, USA

    Kyle Porter

  6. Institute for Health, Rutgers, The State University of New Jersey, New Brunswick, NJ, USA

    Howard Leventhal

Authors
  1. Kimberly M. Kelly
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Lee Ellington
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Nancy Schoenberg
    View author publications

    You can also search for this author in PubMed Google Scholar

  4. Thomas Jackson
    View author publications

    You can also search for this author in PubMed Google Scholar

  5. Stephanie Dickinson
    View author publications

    You can also search for this author in PubMed Google Scholar

  6. Kyle Porter
    View author publications

    You can also search for this author in PubMed Google Scholar

  7. Howard Leventhal
    View author publications

    You can also search for this author in PubMed Google Scholar

  8. Michael Andrykowski
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to Kimberly M. Kelly.

Rights and permissions

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

Kelly, K.M., Ellington, L., Schoenberg, N. et al. Genetic counseling content: How does it impact health behavior?. J Behav Med 38, 766–776 (2015). https://doi.org/10.1007/s10865-014-9613-2

Download citation

  • Received:

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s10865-014-9613-2

Keywords

Search

Navigation