Addressing the Support Needs of Women at High Risk for Breast Cancer: Evidence-Based Care by Advanced Practice Nurses

Dawn Stacey

Cathy DeGrasse

Lisa Johnston

ONF 2002, 29(6), E77-E84. DOI: 10.1188/02.ONF.E77-E84

Purpose/Objectives: To identify support needs of women at high risk for breast cancer and enhance an evidence-based service.

Design: Descriptive study.

Setting: A comprehensive, breast-health service for high-risk women.

Sample: 97 high-risk women with a 1.66% or greater five-year risk of breast cancer, atypical hyperplasia, lobular carcinoma in situ, or positive genetic screen.

Methods: A self-assessment questionnaire completed previsit and a satisfaction survey completed postvisit.

Main Research Variables: Women's perceived informational, emotional, and decisional support needs, current self-care practices, and satisfaction with the service provided.

Findings: Women under age 50 (n = 54) wanted information on breast cancer screening, risk of breast cancer, lifestyle options to lower risk, and hormone replacement therapy; older women (n = 43) wanted information on risk of breast cancer, lifestyle options, breast cancer screening, and chemoprevention. More than 75% of all women wanted information to help them make decisions on breast cancer prevention options, benefits, and risks. The satisfaction survey (N = 61) revealed that most women's needs were met.

Conclusions: Support needs were consistent with the literature that focused primarily on younger women seeking genetic counseling. Proactive planning assisted with addressing the needs of these women.

Implications for Nursing: A previsit questionnaire facilitates individualized proactive planning before the visit. However, further assessment of self-care practices and emotional needs is required. Interventions should evaluate outcomes, such as accurate risk perception, lifestyle changes, screening follow-through, and decision quality. Advanced practice nurses require specialized skills, including evidence-based risk communication, behavior modification, and decision support.

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    American Cancer Society. (2001). Breast cancer: Early detection. Retrieved May 3, 2002, from

    American Institute for Cancer Research. (1997). Food, nutrition, and the prevention of cancer: A global perspective. Washington, DC: Author.

    Armstrong, K., Eisen, A., & Weber, B. (2000). Assessing the risk of breast cancer. New England Journal of Medicine, 342, 564-571.

    Audrain, J., Rimer, B., Cella, D., Garber, J., Peshkin, N., Ellis, J., et al. (1998). Genetic counseling and testing for breast-ovarian cancer susceptibility: What do women want? Journal of Clinical Oncology, 16, 133-138.

    Bandura, A. (1997). Self-efficacy: The exercise of control. New York: W.H. Freeman.

    Bernhardt, B.A., Geller, G., Doksum, T., & Metz, S.A. (2000). Evaluation of nurses and genetic counselors as providers of education about breast cancer susceptibility testing. Oncology Nursing Forum, 27, 33-39.

    Canadian Cancer Society. (2002). Breast health. Retrieved May 3, 2002, from

    Canadian Nurses Association. (2000). Advanced nursing practice: A national framework. Ottawa, Ontario: Author.

    Chalmers, K., Thomson, K., & Degner, L.F. (1995). Information, support, and communication needs of women with a family history of breast cancer. Cancer Nursing, 19, 204-213.

    Chlebowski, R.T., & Collyar, D.E. (1999). Technology assessment breast cancer risk reduction strategies: Tamoxifen and raloxifene. Alexandria, VA: American Society of Clinical Oncology, Health Services Research Department.

    Evans, D.G., Blair, V., Greenhalgh, R., Hopwood, P., & Howell, A. (1994). The impact of genetic counseling on risk perception in women with a family history of breast cancer. British Journal of Cancer, 70, 934-938.

    Fisher, B., Joseph, P., Costantino, D., Wickerham, D.L., Redmond, C.K., Kavanah, M., et al. (1998). Tamoxifen for prevention of breast cancer: Report of the National Surgical Adjuvant Breast and Bowel project P-1 study. Journal of the National Cancer Institute, 90, 1371-1388.

    Freudenheim, J. (2001, May). Nutrition in the epidemiology of breast cancer. Paper presented at the 2nd Scientific Conference of the Canadian Breast Cancer Research Initiative, Quebec City, Quebec.

    Friedenreich, C.M., Thune, I., Brinton, L.A., & Albanes, D. (1998). Epidemiologic issues related to the association between physical activity and breast cancer. Cancer Supplement, 83, 600-610.

    Gail, M.H., Brinton, L.A., Gyar, D.P., Corle, D.K., Green, S.B., Scharirer, C., et al. (1989). Projecting individualized probabilities of developing breast cancer for white females who are being examined annually. Journal of the National Cancer Institute, 81, 1879-1886.

    Gandini, S., Merzenich, H., Robertson, C., & Boyle, P. (2000). Meta-analysis of studies on breast cancer risk and diet: The role of fruit and vegetable consumption and the intake of associated micronutrients. European Journal of Cancer, 36, 636-646.

    Gross, R.E. (2000). Breast cancer: Risk factors, screening, and prevention. Seminars in Oncology Nursing, 16, 176-184.

    Hallowell, N., Murton, F., Statham, H., Green, J.M., Richards, M.P.M. (1997). Women's need for information before attending genetic counseling for familial breast or ovarian cancer: A questionnaire, interview, and observational study. British Medical Journal, 314, 281-283.

    Hamric, A.B., & Spross, J.A. (1989). The clinical nurse specialist in theory and practice. Philadelphia: Saunders.

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

    Hopwood, P., Keeling, F., Long, A., Pool, C., Evans, G., & Howell, A. (1998). Psychological support needs for women at high genetic risk of breast cancer: Some preliminary indicators. Psycho-oncology, 7, 402-412.

    Kash, K.M., Holland, J.C., Halper, M.S., & Miller, D.G. (1992). Psychological distress and surveillance behaviors of women with a family history of breast cancer. Journal of the National Cancer Institute, 84, 24-30.

    Kash, K.M., Holland, J.C., Osborne, M.P., & Miller, D.G. (1995). Psychological counseling strategies for women at risk of breast cancer. Journal of the National Cancer Institute Monographs, 17, 73-79.

    Kerlikowske, K. (1997). Efficacy of screening mammography among women aged 40 to 49 and 50 to 69 years: Comparison of relative and absolute benefit. Journal of the National Cancer Institute Monographs, 22, 79-86.

    Klijn, J.G., Janin, N., Cortes-Funes, H., & Colomer, R. (1997). Should prophylactic surgery be used in women with at high risk of breast cancer? European Journal of Cancer, 33, 2149-2159.

    Lerman, C., Kash, K., & Stefanek, M. (1994). Younger women at increased risk for breast cancer: Perceived risk, psychological well-being, and surveillance behavior. Journal of the National Cancer Institute Monographs, 16, 171-176.

    Lerman, C., Schwartz, M.D., Miller, S.M., Daly, M., Sands, C., & Rimer, B. (1996). A randomized trial of breast cancer risk counseling: Interacting effects of counseling, education level, and coping style. Health Psychology, 15(2), 75-83.

    Lev, E.L. (1997). Bandura's theory of self-efficacy: Applications to oncology. Scholarly Inquiry for Nursing Practice, 11(1), 21-37.

    Lloyd, S., Watson, M., Waites, B., Meyer, L., Eeles, R., Ebbs, S., et al. (1996). Familial breast cancer: A controlled study of risk perception, psychological morbidity and health beliefs in women attending for genetic counseling. British Journal of Cancer, 74, 482-487.

    Longnecker, M.P. (1994). Alcoholic beverage consumption in relation to risk of breast cancer: Meta-analysis and review. Cancer Causes and Control, 5(1), 73-82.

    MacDonald, D.J. (1997). The oncology nurse's role in cancer risk assessment and counseling. Seminars in Oncology Nursing, 13, 123-128.

    Mahon, S.M. (1995). Prevention and early detection of cancer in women. Seminars in Oncology Nursing, 11, 88-102.

    National Cancer Institute. (2000). Breast cancer risk assessment tool. Retrieved April 30, 2002, from

    National Cancer Institute. (2001). Breast cancer. Retrieved April 30, 2002, from

    O'Connor A.M., Tugwell P., Wells G.A., Elmslie, T., Jolly, E., Holling-worth, G., et al. (1998). A decision aid for women considering hormone therapy after menopause: Decision support framework and evaluation. Patient Education and Counseling, 33, 267-279.

    Oncology Nursing Society. (2001). The role of the advanced practice nurse in oncology care. Retrieved May 3, 2002, from

    Ontario Cancer Genetics Network. (1999). Ontario Cancer Genetics Network consensus recommendations for breast cancer risk management in familial breast/ovarian cancer. Toronto: Author.

    Pender, N.J. (1996). Health promotion in nursing practice. Stanford, CT: Appleton & Lange.

    Picker Institute. (2000). Surveys. Boston: Author. Retrieved April 3, 2000, from

    Picker Institute Europe. (2002). Sample questions. Retrieved May 3, 2002, from

    Richardson, J.L., Mondrus, G.T., Deapen, D., & Mack, T.M. (1994). Future challenges in secondary prevention of breast cancer for women at high risk. Cancer Supplement, 74, 1474-1481.

    Spross, J.A., & Heaney, C.A. (2000). Shaping advanced nursing practice in the new millennium. Seminars in Oncology Nursing, 16, 12-24.

    Stacey, C.D. (2000). Development and evaluation of a breast cancer prevention decision aid to address the needs of women aged 50 and older at high risk for breast cancer. Unpublished master's thesis, University of Ottawa, Ontario, Canada.

    Stacey, C.D., Jacobsen, M.J., & O'Connor, A.M. (1999). Nurses guiding breast cancer-related decisions: A decision support framework. Innovations in Breast Cancer Care, 4(3), 71-81.

    Stewart, M.J. (1995). Social support, coping, and self-care: Public participation concepts. In M.J. Stewart (Ed.), Community nursing (pp. 89-124). Philadelphia: Saunders.

    Swedish Cancer Society & Swedish National Board of Health and Welfare. (1996). Breast-cancer screening with mammography in women aged 40-49 years. International Journal of Cancer, 68, 693-699.

    Tessaro, I., Borstelmann, N., Regan, K., Rimer, B.K., & Winer, E. (1997). Genetic testing for susceptibility to breast cancer: Findings from women's focus groups. Journal of Women's Health, 6, 317-327.

    Thomas, D.B., Gao, D.L., Self, S.G., Allison, C.J., Tao, Y., Mahloch, J., et al. (1997). Randomized trial of breast self-examination in Shanghai: Methodology and preliminary results. Journal of the National Cancer Institute, 89, 355-365.

    Trentham-Dietz, A., Newcomb, P.A., Storer, B.E., Longnecker, M.P., Baron, J., Greenberg, E.R., et al. (1997). Body size and risk of breast cancer. American Journal of Epidemiology, 145, 1011-1019.

    Verloop, J., Rookus, M.A., van der Kooy, K., & van Leeuwen, F.E. (2000). Physical activity and breast cancer risk in women aged 20-54 years. Journal of the National Cancer Institute, 92, 128-135.

    Vogel, V.G. (2000). Breast cancer prevention: A review of current evidence. CA: A Cancer Journal for Clinicians, 50, 156-170.

    Zimmerman, R.S., & Connor, C. (1989). Health promotion in context: The effects of significant others on health behaviour change. Health Education Quarterly, 16(1), 57-75.