Journal of Genetic Counseling

, Volume 16, Issue 3, pp 325–339 | Cite as

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

  • Claire E. Wakefield
  • Bettina Meiser
  • Judi Homewood
  • Michelle Peate
  • Judy Kirk
  • Beverley Warner
  • Elizabeth Lobb
  • Clara Gaff
  • Kathy Tucker
Original Research

 

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.

KEY WORDS

decision aids genetic testing hereditary breast cancer HNPCC 

REFERENCES

  1. 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.PubMedCrossRefGoogle Scholar
  2. 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.PubMedCrossRefGoogle Scholar
  3. Australian Bureau of Statistics (2006). Australian social trends 2006. Canberra, Australian Bureau of Statistics.Google Scholar
  4. 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.CrossRefGoogle Scholar
  5. 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.CrossRefGoogle Scholar
  6. 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.CrossRefGoogle Scholar
  7. 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.PubMedCrossRefGoogle Scholar
  8. 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.PubMedCrossRefGoogle Scholar
  9. 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.PubMedCrossRefGoogle Scholar
  10. 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.PubMedCrossRefGoogle Scholar
  11. 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.CrossRefGoogle Scholar
  12. 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.CrossRefGoogle Scholar
  13. 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.PubMedCrossRefGoogle Scholar
  14. 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.Google Scholar
  15. 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.CrossRefGoogle Scholar
  16. 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.PubMedCrossRefGoogle Scholar
  17. Gaff, C., Collins, V., Symes, T., & Halliday, J. (2005). Facilitating family communication about predictive testing: Probands' perceptions. J Genet Counsel, 14(2), 133–140.CrossRefGoogle Scholar
  18. 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.PubMedGoogle Scholar
  19. 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.CrossRefGoogle Scholar
  20. 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.PubMedCrossRefGoogle Scholar
  21. 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.PubMedCrossRefGoogle Scholar
  22. Hopwood, P. (2005). Psychosocial aspects of risk communication and mutation testing in familial breast-ovarian cancer. Curr Opin Oncol, 17(4), 340–344.PubMedCrossRefGoogle Scholar
  23. Human Genetics Society of Australasia (1998). Guidelines for DNA predictive testing.Google Scholar
  24. Kardia, S. L., & Wang, C. (2005). The role of health education and behavior in public health genetics. Health Educ Behav, 32(5), 583–588.PubMedCrossRefGoogle Scholar
  25. 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.PubMedCrossRefGoogle Scholar
  26. 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.PubMedCrossRefGoogle Scholar
  27. 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.PubMedCrossRefGoogle Scholar
  28. 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.PubMedCrossRefGoogle Scholar
  29. 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.CrossRefGoogle Scholar
  30. 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.Google Scholar
  31. 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.PubMedCrossRefGoogle Scholar
  32. 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.PubMedCrossRefGoogle Scholar
  33. Meiser, B. (2005). Psychological impact of genetic testing for cancer susceptibility: an update of the literature. Psycho-Oncology, 14(12), 1060–1074.PubMedCrossRefGoogle Scholar
  34. 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.PubMedCrossRefGoogle Scholar
  35. 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.PubMedCrossRefGoogle Scholar
  36. 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.CrossRefGoogle Scholar
  37. 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.PubMedCrossRefGoogle Scholar
  38. 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.PubMedCrossRefGoogle Scholar
  39. 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.Google Scholar
  40. 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.CrossRefGoogle Scholar
  41. 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.PubMedCrossRefGoogle Scholar
  42. National Health and Medical Research Council (1999). Familial aspects of cancer: A guide to clinical practice. Canberra, National Health and Medical Research Council.Google Scholar
  43. 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.Google Scholar
  44. 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.PubMedCrossRefGoogle Scholar
  45. O'Connor, A. M. (1995). Validation of a decisional conflict scale. Med Decis Making, 15(1), 25–30.PubMedCrossRefGoogle Scholar
  46. 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.Google Scholar
  47. 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.Google Scholar
  48. 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.Google Scholar
  49. 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.PubMedCrossRefGoogle Scholar
  50. 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.PubMedCrossRefGoogle Scholar
  51. 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.PubMedCrossRefGoogle Scholar
  52. 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.PubMedCrossRefGoogle Scholar
  53. 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.PubMedCrossRefGoogle Scholar
  54. 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.PubMedCrossRefGoogle Scholar
  55. 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.PubMedCrossRefGoogle Scholar
  56. 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.PubMedCrossRefGoogle Scholar
  57. 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.PubMedCrossRefGoogle Scholar
  58. 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.PubMedGoogle Scholar
  59. Strate, L. L., & Syngal, S. (2005). Hereditary colorectal cancer syndromes. Cancer Causes Control, 16(3), 201–213.PubMedCrossRefGoogle Scholar
  60. 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.PubMedCrossRefGoogle Scholar
  61. 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.PubMedCrossRefGoogle Scholar
  62. 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.PubMedCrossRefGoogle Scholar
  63. 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.CrossRefGoogle Scholar
  64. 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.PubMedCrossRefGoogle Scholar
  65. 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.PubMedCrossRefGoogle Scholar
  66. 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.PubMedCrossRefGoogle Scholar
  67. 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.PubMedCrossRefGoogle Scholar
  68. 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.PubMedCrossRefGoogle Scholar
  69. 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.PubMedGoogle Scholar
  70. Wise, P. E., & Mutch, M. G. (2005). Hereditary nonpolyposis colorectal cancer. Semin Colon Rectal Surg, 15(3), 136–146.CrossRefGoogle Scholar

Copyright information

© Springer Science+Business Media, LLC 2006

Authors and Affiliations

  • Claire E. Wakefield
    • 1
    • 2
    • 9
  • Bettina Meiser
    • 2
    • 3
  • Judi Homewood
    • 1
  • Michelle Peate
    • 2
  • Judy Kirk
    • 4
  • Beverley Warner
    • 5
  • Elizabeth Lobb
    • 6
  • Clara Gaff
    • 7
  • Kathy Tucker
    • 2
    • 8
  1. 1.Department of PsychologyMacquarie UniversitySydneyAustralia
  2. 2.Department of Medical OncologyPrince of Wales HospitalRandwickAustralia
  3. 3.School of PsychiatryThe University of New South WalesRandwickAustralia
  4. 4.Familial Cancer Service, Westmead HospitalWestmeadAustralia
  5. 5.Cabrini HospitalMalvernAustralia
  6. 6.WA Center for Cancer & Palliative CareSchool of Nursing, Midwifery and Postgraduate Medicine, Edith Cowan UniversityPerthAustralia
  7. 7.Genetic Health Services Victoria and Royal Melbourne HospitalParkvilleAustralia
  8. 8.Prince of Wales Clinical SchoolUniversity of New South WalesRandwickAustralia
  9. 9.Department of Medical OncologyPrince of Wales Hospital, RandwickSydneyAustralia

Personalised recommendations