Familial Cancer

, Volume 5, Issue 2, pp 159–167

Determinants of Preferences for Genetic Counselling in Jewish Women

  • Carmel Apicella
  • Stuart J. Peacock
  • Lesley Andrews
  • Katherine Tucker
  • Agnes Bankier
  • Mary B. Daly
  • John L. Hopper
Article

Abstract

Introduction: Patient preferences are central to the economic appraisal of health services. Cancer genetic services are relatively new, and little is known about clients’ preferences. We sought to determine clients’ preferences for genetic service delivery, and to identify factors that predict those preferences. Methods: We studied female participants in the Australian Jewish Breast Cancer Study who were offered a test for ancestral mutations in the BRCA1 and BRCA2 genes. Questionnaires, asking respondents to rank their preferences for functions, or attributes, of genetic counselling were received from 256 women (76% response rate). Results: Sixty-two per cent of the respondents gave their highest preference for information on cancer and genetic risk; 19% gave it to breast and ovarian cancer surveillance; 14% gave it to preparation for testing; and, 5% gave it to direction with decision making. Most ranked direction as their least preferred attribute (53%). Women with a strong cancer family history were less likely to give highest preference to information (52%) and more likely to give highest preference to preparation for testing (22%) (P=0.04; 0.01, respectively). Women with a university degree were less likely to give highest preference to surveillance (15%) (P=0.04). Conclusion: Most women offered testing had highest preference for information and lowest preference for direction. We have identified factors that predict highest preference for information, preparation, and surveillance attributes. Understanding preferences and their predictors may assist cancer genetic services to provide clients with greater benefits from counselling.

Keywords

Ashkenazi breast cancer BRCA1 BRCA2 client preferences genetic counselling 

Preview

Unable to display preview. Download preview PDF.

Unable to display preview. Download preview PDF.

References

  1. 1.
    Boyle, MH, Torrance, GW, Sinclair, JC, Horwood, SP 1983Economic evaluation of neonatal intensive care of very-low-birth-weight infantsN Eng J Med30813307CrossRefGoogle Scholar
  2. 2.
    Williams, AH 1985Economics of coronary artery bypass graftingBrit Med J2913269CrossRefGoogle Scholar
  3. 3.
    Neumann, J, Morgenstern, O 1947Theory of Games and Economic Behaviour2nd ed.Princeton University PressPrinceton, NJGoogle Scholar
  4. 4.
    Savage, LJ 1954The Foundations of StatisticsWileyNew YorkGoogle Scholar
  5. 5.
    Luce, RD, Raiffa, H 1957Games and DecisionsWileyNew YorkGoogle Scholar
  6. 6.
    Gold MR, Siegel JE, Russell LB, Weinstein MC (eds). Cost-Effectiveness in Health and Medicine. New York: Oxford University Press, 1996Google Scholar
  7. 7.
    Ryan, M, Farrar, S 2000Using conjoint analysis to elicit preferences for health careBrit Med J32015303PubMedGoogle Scholar
  8. 8.
    Thompson, JA, Wiesner, GL, Sellers, TA, Vachon, C, Ahrens, M, Potter, JD,  et al. 1995Genetic services for familial cancer patients: a survey of National Cancer Institute cancer centersJ Natl Cancer Inst87144655PubMedGoogle Scholar
  9. 9.
    IHA and WFN guidelines. Guidelines for the molecular genetics predictive test in Huntington’s disease. International Huntington Association (IHA) and the World Federation of Neurology (WFN) Research Group on Huntington’s Chorea, 1994Google Scholar
  10. 10.
    Murday, V 1994Genetic counselling in the cancer family clinicEuro J Cancer30A20125CrossRefGoogle Scholar
  11. 11.
    Shiloh, S, Avdor, O, Goodman, RM 1990Satisfaction with genetic counseling: dimensions and measurementAm J Med Genet375229PubMedCrossRefGoogle Scholar
  12. 12.
    Holloway, S, Porteous, M, Cetnarskyj, R, Anderson, E, Rush, R, Fry, A,  et al. 2004Patient satisfaction with two different models of cancer genetic services in south-east ScotlandBr J Cancer905829PubMedCrossRefGoogle Scholar
  13. 13.
    Audrain, J, Rimer, B, Cella, D, Garber, J, Peshkin, BN, Ellis, J,  et al. 1998Genetic counseling and testing for breast-ovarian cancer susceptibility: what do women want?J Clin Oncol161338PubMedGoogle Scholar
  14. 14.
    Wilson B, Ryan M, Haites N. Assessing user preferences for, and costs of, genetic counselling for familial cancer risk in Scotland: a cost-utility analysis using conjoint analysis. Report to the Chief Scientist Office, Scottish Executive Health Department, 2000Google Scholar
  15. 15.
    Brain, K, Gray, J, Norman, P, France, E, Anglim, C, Barton, G,  et al. 2000Randomized trial of a specialist genetic assessment service for familial breast cancerJ Natl Cancer Inst92134551PubMedCrossRefGoogle Scholar
  16. 16.
    Cappelli, M, Surh, L, Humphreys, L, Verma, S, Logan, D, Hunter, A, Allanson, J 2001Measuring women’s preferences for breast cancer treatments and BRCA1/BRCA2 testingQual Life Res10595607PubMedCrossRefGoogle Scholar
  17. 17.
    Clarke, A, Parsons, E, Williams, A 1996Outcomes and process in genetic counsellingClin Genet504629PubMedCrossRefGoogle Scholar
  18. 18.
    Holloway, S, Porteous, M, Cetnarskyj, R, Anderson, E, Rush, R, Fry, A, Gorman, D, Steel, M, Campbell, H 2004Patient satisfaction with two different models of cancer genetic services in south-east ScotlandBr J Cancer905829PubMedCrossRefGoogle Scholar
  19. 19.
    Brandt R, Hartmann E, Ali Z, Tucci R, Gilman P. Motivations and concerns of women considering genetic testing for breast cancer: a comparison between affected and at-risk probands. Genet Test Fall 2002; 6(3): 203–5Google Scholar
  20. 20.
    Meiser, B, Butow, P, Barratt, A, Friedlander, M, Kirk, J, Gaff, C, Haan, E, Aittomaki, K, Tucker, K 2000Breast cancer screening uptake in women at increased risk of developing hereditary breast cancerBreast Cancer Res Treat5910111PubMedCrossRefGoogle Scholar
  21. 21.
    Michie, S, Allanson, A, Armstrong, D, Weinman, J, Bobrow, M, Marteau, TM 1998Objectives of genetic counselling: differing views of purchasers, providers and usersPublic Health Med204048Google Scholar
  22. 22.
    Michie, S, McDonald, V, Marteau, TM 1997Genetic counselling: information given, recall and satisfactionPatient Educ Couns321016PubMedCrossRefGoogle Scholar
  23. 23.
    Bernhardt, BA, Biesecker, BB, Mastromarino, CL 2000Goals, benefits, and outcomes of genetic counseling: client and genetic counselor assessmentAm J Med Genet9418997PubMedCrossRefGoogle Scholar
  24. 24.
    Geller, G, Bernhardt, BA, Doksum, T, Helzlsouer, KJ, Wilcox, P, Holtzman, NA 1998Decision-making about breast cancer susceptibility testing: how similar are the attitudes of physicians, nurse practitioners, and at-risk women?J Clin Oncol16286876PubMedGoogle Scholar
  25. 25.
    Metcalfe, KA, Liede, A, Hoodfar, E, Scott, A, Foulkes, WD, Narod, SA 2000An evaluation of needs of female BRCA1 and BRCA2 carriers undergoing genetic counselingJ Med Genet3786674PubMedCrossRefGoogle Scholar
  26. 26.
    McGivern SA. Patient satisfaction with quality of care in a hospital system in Qatar. J Healthc Qual 1999; 21(1): 28–9, 32–6, 41Google Scholar
  27. 27.
    Hagerty, RG, Butow, PN, Ellis, PA, Lobb, EA, Pendlebury, S, Leighl, N,  et al. 2004Cancer patient preferences for communication of prognosis in the metastatic settingJ Clin Oncol22172130PubMedCrossRefGoogle Scholar
  28. 28.
    Andermann, AA, Watson, EK, Lucassen, AM, Austoker, J 2001The opinions, expectations and experiences of women with a family history of Breast Cancer who consult their GP and are referred to secondary careCommun Genet423943CrossRefGoogle Scholar
  29. 29.
    Lobb, EA, Butow, PN, Barratt, A, Meiser, B, Gaff, C, Young, MA,  et al. 2004Communication and information-giving in high-risk breast cancer consultations: influence on patient outcomesBr J Cancer903217PubMedCrossRefGoogle Scholar
  30. 30.
    Lobb, EA, Butow, PN, Meiser, B, Barratt, A, Gaff, C, Young, MA,  et al. 2003Women’s preferences and consultants’ communication of risk in consultations about familial breast cancer: impact on patient outcomesJ Med Genet40e56PubMedCrossRefGoogle Scholar
  31. 31.
    Satagopan, JM, Offit, K, Foulkes, W, Robson, ME, Wacholder, S, Eng, CM,  et al. 2001The lifetime risks of breast cancer in Ashkenazi Jewish carriers of BRCA1 and BRCA2 mutationsCancer Epidemiol Biomarkers Prev1046773PubMedGoogle Scholar
  32. 32.
    John EM, Hopper JL, Beck JC, Knight JA, Neuhausen SL, Senie RT et al. Breast Cancer Family Registry: an infrastructure for cooperative multinational, interdisciplinary and translational studies of the genetic epidemiology of breast cancer. Breast Cancer Res 2004; 6(4): R375–89. Epub 2004Google Scholar
  33. 33.
    Apicella C, Andrew L, Hodgson SV, Fisher SA, Lewis CM, Solomon E, et al. Log Odds of Carrying an Ancestral Mutation in BRCA1 or BRCA2 for a Defined Personal and Family History in an Ashkenazi Jewish Woman (LAMBDA). Breast Cancer Res 2003, 5: R206–R216Google Scholar
  34. 34.
    Southey, MC, Tesoriero, AA, Andersen, CR, Jennings, KM, Brown, SM, Dite, GS,  et al. 1999BRCA1 Mutations and other sequence variants in a population-based sample of Australian women with breast cancerBr J Cancer79349PubMedCrossRefGoogle Scholar
  35. 35.
    Hughes, C, Gomez-Caminero, A, Benkendorf, J,  et al. 1997Ethnic differences in knowledge and attitudes about BRCA1 testing in women at increased riskPatient Educ Couns325162PubMedCrossRefGoogle Scholar
  36. 36.
    Lerman, C, Biesecker, B, Benkendorf, JL,  et al. 1997Controlled trial of pretest education approaches to enhance informed decision-making for BRCA1 gene testingJ Natl Cancer Inst8914857PubMedCrossRefGoogle Scholar
  37. 37.
    Spielberg. Manual for the State Trait Anxiety Inventory. Palo Alto, CA, USA: Consulting Psychologists Press, 1983Google Scholar

Copyright information

© Springer 2006

Authors and Affiliations

  • Carmel Apicella
    • 1
  • Stuart J. Peacock
    • 2
  • Lesley Andrews
    • 3
  • Katherine Tucker
    • 3
  • Agnes Bankier
    • 4
  • Mary B. Daly
    • 5
  • John L. Hopper
    • 1
  1. 1.Centre for Molecular, Environmental, Genetic and Analytic EpidemiologyUniversity of MelbourneMelbourneAustralia
  2. 2.British Columbia Cancer AgencyVancouverCanada
  3. 3.Prince of Wales HospitalSydneyAustralia
  4. 4.Genetic Health Services VictoriaMelbourneAustralia
  5. 5.Fox Chase Cancer CentrePhiladelphiaUSA
  6. 6.Centre for Genetic EpidemiologyUniversity of MelbourneMelbourneAustralia

Personalised recommendations