Top

Published in:

01-06-2007 | Original Research

Development and Pilot Testing of Two Decision Aids for Individuals Considering Genetic Testing for Cancer Risk

Authors: Claire E. Wakefield, Bettina Meiser, Judi Homewood, Michelle Peate, Judy Kirk, Beverley Warner, Elizabeth Lobb, Clara Gaff, Kathy Tucker

Published in: Journal of Genetic Counseling | Issue 3/2007

Current practice in genetic counseling may not allow a full deliberation of the consequences of decisions about genetic testing for cancer risk, despite increasing demand for these services. Thus, two decision aids for individuals considering genetic testing for hereditary breast/ovarian cancer and hereditary non-polyposis colorectal cancer (HNPCC) susceptibility were developed and pilot tested with 43 individuals who had previously considered genetic testing for these cancer syndromes. A description of the decision aid development process is provided, as well as results of the pilot testing, which assessed participants’ perceptions of the decision aids. All participants reported that they would recommend the decision aid to others facing the same situation, and 93% reported that the decision aid would have been relevant during their decision-making. The perceived impact of the decision aids on participants’ emotions and understanding of genetic testing were assessed. Limitations of the study and future directions are discussed.

Aktan-Collan, K., Haukkala, A., Mecklin, J., Uutela, A., et al. (2001). Psychological consequences of predictive testing for hereditary non-polyposis colorectal cancer (HNPCC): A prospective follow up study. Int J Cancer, 93, 608–611.PubMedCrossRef

Armstrong, K., Micco, E., Carney, A., Stopfer, J., et al. (2005). Racial differences in the use of BRCA1/2 testing among women with a family history of breast or ovarian cancer. JAMA, 293(14), 1729–1736.PubMedCrossRef

Australian Bureau of Statistics (2006). Australian social trends 2006. Canberra, Australian Bureau of Statistics.

Ayme, S., Marquart-Moulin, G., Julian-Reymier, C., Chabal, F., et al. (1993). Diffusion of information about genetic risk within families. Neuromuscul Disord, 3, 571–574.CrossRef

Bebbington Hatcher, M., Fallowfield, L., & A'Hern, R. (2001). The psychological impact of prophylactic mastectomy: Prospective study using questionnaires and semistructured interviews. Br Med J, 322(322), 76–79.CrossRef

Botkin, J. R., Smith, K. R., Croyle, R. T., Baty, B. J., et al. (2003). Genetic testing for a BRCA1 mutation: prophylactic surgery and screening behavior in women 2 years post testing. Am J Med Genet, Part A, 118(3), 201–209.CrossRef

Braithwaite, D., Emery, J., Walter, F., Prevost, A. T., et al. (2006). Psychological impact of genetic counseling for familial cancer: a systematic review and meta-analysis. Familial Cancer, 5(1), 61–75.PubMedCrossRef

Brehaut, J. C., O'Connor, A. M., Wood, T. J., Hack, T. F., et al. (2003). Validation of a decision regret scale. Med Decis Making, 23(4), 281–292.PubMedCrossRef

Broadstock, M., Michie, S., Gray, J., MacKay, J., et al. (2000). The psychological consequences of offering mutation searching in the family for those at risk of hereditary breast and ovarian cancer - A pilot study. Psycho-Oncology, 9, 537–548.PubMedCrossRef

Burke, W., & Lata, M. B. (1999). Genetic risk and breast cancer survival: Another link in the chain of evidence. J Natl Cancer Inst, 91(3), 201–203.PubMedCrossRef

Butow, P., Brindle, E., McConnell, D., Boakes, R., et al. (1998). Information booklets about cancer: Factors influencing patient satisfaction and utilisation. Patient Educ Counsel, 33, 129–141.CrossRef

Claes, E., Denayer, L., Evers-Kiebooms, G., Boogaerts, A., et al. (2004). Predictive testing for hereditary non-polyposis colorectal cancer: motivation, illness representations and short-term psychological impact. Patient Educ Counsel, 55(2), 265–274.CrossRef

Cull, A., Anderson, E. D. C., Campbell, S., Mackay, J., et al. (1999). The impact of genetic counselling about breast cancer risk on women's risk perceptions and levels of distress. Br J Cancer, 79(3–4), 501–508.PubMedCrossRef

Daly, M. B., Barsevick, A., Miller, S. M., Buckman, R., et al. (2001). Communicating genetic test results to the family: A six-step skills-building strategy. Fam Commun Health, 24(3), 13–26.

Ford, D., Easton, D. F., Stratton, M., Narod, S., et al. (1998). Genetic heterogeneity and penetrance analysis of the BRCA1 and BRCA2 genes in breast cancer families. Am J Human Genet, 62(3), 676–689.CrossRef

Fry, A., Busby-Earle, C., Rush, R., & Cull, A. (2001). Prophylactic oophorectomy versus screning: Psychosocial outcomes in women at increased risk of ovarian cancer. Psycho-Oncology, 10, 231–241.PubMedCrossRef

Gaff, C., Collins, V., Symes, T., & Halliday, J. (2005). Facilitating family communication about predictive testing: Probands' perceptions. J Genet Counsel, 14(2), 133–140.CrossRef

Glanz, K., Grove, J., Lerman, C., Gotay, C., et al. (1999). Correlates of intentions to obtain genetic counseling and colorectal cancer gene testing among at-risk relatives from three ethnic groups. Cancer Epidemiol Biomarkers Prev, 8(4 II), 329–336.PubMed

Green, M. J., Peterson, S. K., Baker, M. W., Harper, G. R., 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. J Am Med Assoc, 292(4), 442–452.CrossRef

Hadley, D. W., Jenkins, J. F., Dimond, E., De Carvalho, M., et al. (2004). Colon cancer screening practices after genetic counseling and testing for hereditary nonpolyposis colorectal cancer. J Clin Oncol., 22(1), 39–44.PubMedCrossRef

Hallowell, N., MacKay, J., Richards, M., Gore, M., et al. (2004). High-risk women's experiences of undergoing prophylactic oophorectomy: A descriptive study. Genet Test, 8(2), 148–156.PubMedCrossRef

Hopwood, P. (2005). Psychosocial aspects of risk communication and mutation testing in familial breast-ovarian cancer. Curr Opin Oncol, 17(4), 340–344.PubMedCrossRef

Human Genetics Society of Australasia (1998). Guidelines for DNA predictive testing.

Kardia, S. L., & Wang, C. (2005). The role of health education and behavior in public health genetics. Health Educ Behav, 32(5), 583–588.PubMedCrossRef

Lackner, C., & Hoefler, G. (2005). Critical issues in the identification and management of patients with hereditary non-polyposis colorectal cancer. Eur J Gastroenterol Hepatol, 17(3), 317–322.PubMedCrossRef

Lerman, C., Biesecker, B., & Benkendorf, J. L. (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

Lerman, C., Lustbader, E., Rimer, B., Daly, M., et al. (1995). Effects of individualised breast cancer risk counseling: A randomized trial. J Natl Cancer Inst, 87(4), 286–301.PubMedCrossRef

Lobb, E., Butow, P., Meiser, B., Barratt, A., et al. (2002). Tailoring communication in consultations with women from high-risk breast cancer families. Br J Cancer, 87(5), 502–508.PubMedCrossRef

Lobb, E., Butow, P., Meiser, B., Tucker, K., et al. (2001). How do geneticists and genetic counselors counsel women from high-risk breast cancer families? J Genet Counsel, 10(2), 185–199.CrossRef

Lobb, E., Butow, P., Moore, A., Barratt, A., et al. (2006). Development of a communication aid to facilitate risk communication in consultations with unaffected women from high risk breast cancer families: A pilot study. J Genet Counsel, 15(5), 393–405.

Lodder, L., Frets, P. G., Trijsburg, R. W., Meijers-Heijboer, E. J., et al. (2001). Psychological impact of receiving a BRCA1/BRCA2 test result. Am J Med Genet, 98, 15–24.PubMedCrossRef

McAllister, M. F., Evans, D. G. R., Ormiston, W., & Daly, P. (1998). Men in breast cancer families: A preliminary qualitative study of awareness and experience. J Med Genet, 35, 739–744.PubMedCrossRef

Meiser, B. (2005). Psychological impact of genetic testing for cancer susceptibility: an update of the literature. Psycho-Oncology, 14(12), 1060–1074.PubMedCrossRef

Meiser, B., Collins, V., Warren, R., Gaff, C., et al. (2004). Psychological impact of genetic testing for hereditary non-polyposis colorectal cancer. Clin Genet, 66(6), 502–511.PubMedCrossRef

Metcalfe, K. A., Esplen, M. J., Goel, V., & Narod, S. A. (2004). Psychosocial functioning in women who have undergone bilateral prophylactic mastectomy. Psycho-Oncology, 13(1), 14–25.PubMedCrossRef

Michie, S., Dormandy, E., & Marteau, T. M. (2002). The multi-dimensional measure of informed choice: A validation study. Patient Educ Counsel, 48(1), 87–91.CrossRef

Miller, S. M., Diefenbach, M. A., Kruus, L. K., Watkins-Bruner, D., et al. (2001). Psychological and Screening Profiles of First-Degree Relatives of Prostate Cancer Patients. J Behav Med, 24(3), 247–258.PubMedCrossRef

Miller, S. M., Fang, C. Y., Manne, S. L., Engstrom, P. F., et al. (1999). Decision making about prophylactic oophorectomy among at-risk women: Psychological influences and implications. Gynecol Oncol, 75, 406–412.PubMedCrossRef

Miller, S. M., Fleisher, L., Roussi, P., Buzaglo, J. S., et al. (2005a). Facilitating informed decision making about breast cancer risk and genetic counseling among women calling the NCI's Cancer Information Service. J Health Commun, 1, 119–136.

Miller, S. M., Roussi, P., Daly, M. B., Buzaglo, J. S., et al. (2005b). Enhanced counseling for women undergoing BRCA1/2 testing: impact on subsequent decision making about risk reduction behaviors. Health Edu Behav, 32(5), 654–667.CrossRef

Montgomery, G. H., Erblich, J., DiLorenzo, T., & Bovbjerg, D. H. (2003). Family and friends with disease: Their impact on perceived risk. Prev Med, 37(3), 242–249.PubMedCrossRef

National Health and Medical Research Council (1999). Familial aspects of cancer: A guide to clinical practice. Canberra, National Health and Medical Research Council.

O'Connor, A., Llewellyn-Thomas, H., & Stacey, D. (2005). International Patient Decision Aid Standards Collaboration Background Document. Ottawa, Ottawa Health Research Institute:, pp. 1–54.

O'Connor, A., Tugwell, P., Welles, G. A., Elmslie, T., et al. (1998). Randomized trial of a portable, self-administered decision aid for postmenopausal women considering long-term preventative hormone replacement therapy. Med Decis Making, 18, 295–303.PubMedCrossRef

O'Connor, A. M. (1995). Validation of a decisional conflict scale. Med Decis Making, 15(1), 25–30.PubMedCrossRef

O'Connor, A. M. (1999). Decision aids for patients considering options affecting cancer outcomes: Evidence of efficacy and policy implications. J Natl Cancer Inst, 25, 67–80.

O'Connor, A. M., Rostom, A., Fiset, V., Tetroe, J., et al. (1999). Decision aids for patients facing health treatment or screening decisions: Systematic review. Br Med J, 731–734.

O'Connor, A. M., Stacey, D., Entwistle, V., Llewellyn-Thomas, H., et al. (2006). Decision aids for people facing health treatment or screening decisions. Cochrane Database Syst Rev, 1, 1.

Ozanne, E. M., Klemp, J. R., & Esserman, L. J. (2006). Breast cancer risk assessment and prevention: a framework for shared decision-making consultations. Breast J, 12(2), 103–113.PubMedCrossRef

Peters, N., Domcheck, S. M., Rose, A., Polis, R., et al. (2005). Knowledge, attitudes, and utilization of BRCA1/2 testing among women with early-onset breast cancer. Genet Test, 9(1), 48–53.PubMedCrossRef

Quehenberger, F., Vasen, H. F. A., & Van Houwelingen, H. C. (2005). Risk of colorectal and endometrial cancer for carriers of mutations of the hMLH1 and hMSH2 gene: Correction for ascertainment. J Med Genet, 42(6), 491–496.PubMedCrossRef

Rapport, F., Iredale, R., Jones, W., Sivell, S., et al. (2006). Decision aids for familial breast cancer: exploring women's views using focus groups. Health Expectations, 9(3), 232–244.PubMedCrossRef

Rebbeck, T., Lynch, H., Neuhausen, S., Narod, S., et al. (2002). Prophylactic oophorectomy in carriers of BRCA1 or BRCA2 mutations. N Engl J Med, 346(21), 1616–1622.PubMedCrossRef

Rebbeck, T. R., Levin, A. M., Eisen, A., Snyder, C., et al. (1999). Breast cancer risk after prophylactic oophorectomy in BRCA1 mutation carriers. J Natl Cancer Inst, 91(17), 1475–1479.PubMedCrossRef

Ritvo, P., Robinson, G., Irvine, J., Phil, D., et al. (1999). A longitudinal study of psychological adjustment to familial genetic risk assessment for ovarian cancer. Gynecol Oncol, 74(3), 331–337.PubMedCrossRef

Schwartz, M., Benkendorf, J. L., Lerman, C., Isaacs, C., et al. (2001). Impact of educational print materials on knowledge, attitudes and interest in BRCA1/BRCA2 testing among Ashkenazi Jewish women. Cancer, 92(4), 932–940.PubMedCrossRef

Schwartz, M., Peshkin, B., Hughs, C., Main, D., et al. (2002). Impact of BRCA1/BRCA2 mutation testing on psychological distress in a clinic-based sample. J Clin Oncol, 20(2), 514–520.PubMedCrossRef

Smith, K. R., West, J. A., Croyle, R. T., & Botkin, J. R. (1999). Familial context of genetic testing for cancer susceptibility: Moderating effect of siblings' test result on psychological distress one to two weeks after BRCA1 mutation testing. Cancer Epidemiol Biomarkers Prev, 8, 385–392.PubMed

Strate, L. L., & Syngal, S. (2005). Hereditary colorectal cancer syndromes. Cancer Causes Control, 16(3), 201–213.PubMedCrossRef

Thewes, B., Meiser, B., Taylor, A., Phillips, K., et al. (2005). The fertility- and menopause-related information needs of younger women with a diagnosis of early breast cancer. J Clin Oncol, 23(22), 5155–5165.PubMedCrossRef

van Dijk, S., Otten, W., Timmermans, D. R., van Asperen, C. J., et al. (2005). What's the message? Interpretation of an uninformative BRCA1/2 test result for women at risk of familial breast cancer. Genet Med, 7(4), 239–245.PubMedCrossRef

van Oostrom, I., Meijers-Heijboer, H., Lodder, L. N., Duivenvoorden, H. J., et al. (2003). Long-term psychological impact of carrying a BRCA1/2 mutation and prophylactic surgery: a 5-year follow-up study. J Clin Oncol, 21(20), 3867–3874.PubMedCrossRef

van Roosmalen, M. S., Stalmeier, P. F., Verhoef, L. C., Hoekstra-Weebers, J. E., et al. (2004a). Impact of BRCA1/2 testing and disclosure of a positive test result on women affected and unaffected with breast or ovarian cancer. Am J Med Genet, Part A, 124(4), 346–355.CrossRef

van Roosmalen, M. S., Stalmeier, P. F., Verhoef, L. C., Hoekstra-Weebers, J. E., et al. (2004b). Randomized trial of a decision aid and its timing for women being tested for a BRCA1/2 mutation. Br J Cancer, 90(2), 333–342.PubMedCrossRef

Wagner, A., van Kessel, I., Kriege, M. G., Tops, C. M., et al. (2005). Long term follow-up of HNPCC gene mutation carriers: compliance with screening and satisfaction with counseling and screening procedures. Familial Cancer, 4(4), 295–300.PubMedCrossRef

Wagner, T. M. U., Moslinger R., Lanbauer, G., Ahner, R., et al. (2000). Attitude towards prophylactic surgery and effects of genetic counselling in families with BRCA mutations. Br J Cancer, 82(7), 1249–1253.PubMedCrossRef

Wang, C., Bowen, D. J., & Kardia, S. L. (2005). Research and Practice Opportunities at the Intersection of Health Education, Health Behavior, and Genomics. Health Educ Behav, 32(5), 686–701.PubMedCrossRef

Watson, M., Foster, C., Eeles, R., Eccles, D., et al. (2004). Psychosocial impact of breast/ovarian (BRCA1/2) cancer-predictive genetic testing in a UK multi-centre clinical cohort. Br J Cancer, 91(10), 1787–1794.PubMedCrossRef

Weinstein, N. D., Atwood, K., Puleo, E., Fletcher, R., et al. (2004). Colon cancer: risk perceptions and risk communication. J Health Commun, 9(1), 53–65.PubMed

Wise, P. E., & Mutch, M. G. (2005). Hereditary nonpolyposis colorectal cancer. Semin Colon Rectal Surg, 15(3), 136–146.CrossRef

Title: Development and Pilot Testing of Two Decision Aids for Individuals Considering Genetic Testing for Cancer Risk
Authors: Claire E. Wakefield
Bettina Meiser
Judi Homewood
Michelle Peate
Judy Kirk
Beverley Warner
Elizabeth Lobb
Clara Gaff
Kathy Tucker
Publication date: 01-06-2007
Publisher: Kluwer Academic Publishers-Plenum Publishers
Published in: Journal of Genetic Counseling / Issue 3/2007
Print ISSN: 1059-7700
Electronic ISSN: 1573-3599
DOI: https://doi.org/10.1007/s10897-006-9068-x

At a glance: The ONWARDS insulin icodec trials

Springer Medicine

Development and Pilot Testing of Two Decision Aids for Individuals Considering Genetic Testing for Cancer Risk

At a glance: The ONWARDS insulin icodec trials

Springer Medicine

Please log in to get access to this content

Other articles of this Issue 3/2007

Clinical Characterization and Risk Profile of Individuals Seeking Genetic Counseling for Hereditary Breast Cancer in Brazil

Are You Really Listening? Keys to Successful Communication

Risk Assessment and Genetic Counseling for Hereditary Breast and Ovarian Cancer: Recommendations of the National Society of Genetic Counselors

Accuracy of Self-Reported Personal History of Cancer in an Outpatient Breast Center

Genetic Counselling: A Psychological Approach

Cancer Family History Reporting: Impact of Method and Psychosocial Factors