Skip to main content

Advertisement

Log in

Determinants of Preferences for Genetic Counselling in Jewish Women

  • Published:
Familial Cancer Aims and scope Submit manuscript

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.

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

Access this article

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

  1. MH Boyle GW Torrance JC Sinclair SP Horwood (1983) ArticleTitleEconomic evaluation of neonatal intensive care of very-low-birth-weight infants N Eng J Med 308 1330–7 Occurrence Handle1:STN:280:DyaL3s7pt1entQ%3D%3D Occurrence Handle10.1056/NEJM198306023082206

    Article  CAS  Google Scholar 

  2. AH Williams (1985) ArticleTitleEconomics of coronary artery bypass grafting Brit Med J 291 326–9 Occurrence Handle1:STN:280:DyaL2M3ltlyntw%3D%3D Occurrence Handle10.1136/bmj.291.6491.326

    Article  CAS  Google Scholar 

  3. J Neumann Particlevon O Morgenstern (1947) Theory of Games and Economic Behaviour EditionNumber2nd ed. Princeton University Press Princeton, NJ

    Google Scholar 

  4. LJ Savage (1954) The Foundations of Statistics Wiley New York

    Google Scholar 

  5. RD Luce H Raiffa (1957) Games and Decisions Wiley New York

    Google Scholar 

  6. Gold MR, Siegel JE, Russell LB, Weinstein MC (eds). Cost-Effectiveness in Health and Medicine. New York: Oxford University Press, 1996

  7. M Ryan S Farrar (2000) ArticleTitleUsing conjoint analysis to elicit preferences for health care Brit Med J 320 1530–3 Occurrence Handle10834905 Occurrence Handle1:STN:280:DC%2BD3c3psV2msA%3D%3D

    PubMed  CAS  Google Scholar 

  8. JA Thompson GL Wiesner TA Sellers C Vachon M Ahrens JD Potter et al. (1995) ArticleTitleGenetic services for familial cancer patients: a survey of National Cancer Institute cancer centers J Natl Cancer Inst 87 IssueID19 1446–55 Occurrence Handle7674332 Occurrence Handle1:STN:280:DyaK2MvgsVKntw%3D%3D

    PubMed  CAS  Google Scholar 

  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, 1994

  10. V Murday (1994) ArticleTitleGenetic counselling in the cancer family clinic Euro J Cancer 30A 2012–5 Occurrence Handle1:STN:280:DyaK2M3ltF2mtQ%3D%3D Occurrence Handle10.1016/0959-8049(94)00395-L

    Article  CAS  Google Scholar 

  11. S Shiloh O Avdor RM Goodman (1990) ArticleTitleSatisfaction with genetic counseling: dimensions and measurement Am J Med Genet 37 IssueID4 522–9 Occurrence Handle2260600 Occurrence Handle1:STN:280:DyaK3M%2Fot1yrsg%3D%3D Occurrence Handle10.1002/ajmg.1320370419

    Article  PubMed  CAS  Google Scholar 

  12. S Holloway M Porteous R Cetnarskyj E Anderson R Rush A Fry et al. (2004) ArticleTitlePatient satisfaction with two different models of cancer genetic services in south-east Scotland Br J Cancer 90 IssueID3 582–9 Occurrence Handle14760368 Occurrence Handle1:STN:280:DC%2BD2c%2FlvVCgtw%3D%3D Occurrence Handle10.1038/sj.bjc.6601562

    Article  PubMed  CAS  Google Scholar 

  13. J Audrain B Rimer D Cella J Garber BN Peshkin J Ellis et al. (1998) ArticleTitleGenetic counseling and testing for breast-ovarian cancer susceptibility: what do women want? J Clin Oncol 16 IssueID1 133–8 Occurrence Handle9440734 Occurrence Handle1:STN:280:DyaK1c7gtFKrtg%3D%3D

    PubMed  CAS  Google Scholar 

  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, 2000

  15. K Brain J Gray P Norman E France C Anglim G Barton et al. (2000) ArticleTitleRandomized trial of a specialist genetic assessment service for familial breast cancer J Natl Cancer Inst 92 IssueID16 1345–51 Occurrence Handle10944557 Occurrence Handle1:STN:280:DC%2BD3cvjvVCktg%3D%3D Occurrence Handle10.1093/jnci/92.16.1345

    Article  PubMed  CAS  Google Scholar 

  16. M Cappelli L Surh L Humphreys S Verma D Logan A Hunter J Allanson (2001) ArticleTitleMeasuring women’s preferences for breast cancer treatments and BRCA1/BRCA2 testing Qual Life Res 10 595–607 Occurrence Handle11822793 Occurrence Handle1:STN:280:DC%2BD38%2FptlyhtQ%3D%3D Occurrence Handle10.1023/A:1013123915272

    Article  PubMed  CAS  Google Scholar 

  17. A Clarke E Parsons A Williams (1996) ArticleTitleOutcomes and process in genetic counselling Clin Genet 50 462–9 Occurrence Handle9147874 Occurrence Handle1:STN:280:DyaK2s3gsFyisA%3D%3D Occurrence Handle10.1111/j.1399-0004.1996.tb02713.x

    Article  PubMed  CAS  Google Scholar 

  18. S Holloway M Porteous R Cetnarskyj E Anderson R Rush A Fry D Gorman M Steel H Campbell (2004) ArticleTitlePatient satisfaction with two different models of cancer genetic services in south-east Scotland Br J Cancer 90 IssueID3 582–9 Occurrence Handle14760368 Occurrence Handle1:STN:280:DC%2BD2c%2FlvVCgtw%3D%3D Occurrence Handle10.1038/sj.bjc.6601562

    Article  PubMed  CAS  Google Scholar 

  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): 203–5

    Google Scholar 

  20. B Meiser P Butow A Barratt M Friedlander J Kirk C Gaff E Haan K Aittomaki K Tucker (2000) ArticleTitleBreast cancer screening uptake in women at increased risk of developing hereditary breast cancer Breast Cancer Res Treat 59 IssueID2 101–11 Occurrence Handle10817345 Occurrence Handle1:STN:280:DC%2BD3c3nsFSntA%3D%3D Occurrence Handle10.1023/A:1006330631832

    Article  PubMed  CAS  Google Scholar 

  21. S Michie A Allanson D Armstrong J Weinman M Bobrow TM Marteau (1998) ArticleTitleObjectives of genetic counselling: differing views of purchasers, providers and users Public Health Med 20 IssueID4 404–8 Occurrence Handle1:STN:280:DyaK1M7itVyhsw%3D%3D

    CAS  Google Scholar 

  22. S Michie V McDonald TM Marteau (1997) ArticleTitleGenetic counselling: information given, recall and satisfaction Patient Educ Couns 32 IssueID1–2 101–6 Occurrence Handle9355577 Occurrence Handle1:STN:280:DyaK1c%2Fhslaisw%3D%3D Occurrence Handle10.1016/S0738-3991(97)00050-5

    Article  PubMed  CAS  Google Scholar 

  23. BA Bernhardt BB Biesecker CL Mastromarino (2000) ArticleTitleGoals, benefits, and outcomes of genetic counseling: client and genetic counselor assessment Am J Med Genet 94 IssueID3 189–97 Occurrence Handle10995504 Occurrence Handle1:STN:280:DC%2BD3cvks1ahsQ%3D%3D Occurrence Handle10.1002/1096-8628(20000918)94:3<189::AID-AJMG3>3.0.CO;2-E

    Article  PubMed  CAS  Google Scholar 

  24. G Geller BA Bernhardt T Doksum KJ Helzlsouer P Wilcox NA Holtzman (1998) ArticleTitleDecision-making about breast cancer susceptibility testing: how similar are the attitudes of physicians, nurse practitioners, and at-risk women? J Clin Oncol 16 IssueID8 2868–76 Occurrence Handle9704741 Occurrence Handle1:STN:280:DyaK1czmvVCguw%3D%3D

    PubMed  CAS  Google Scholar 

  25. KA Metcalfe A Liede E Hoodfar A Scott WD Foulkes SA Narod (2000) ArticleTitleAn evaluation of needs of female BRCA1 and BRCA2 carriers undergoing genetic counseling J Med Genet 37 866–74 Occurrence Handle11073541 Occurrence Handle1:STN:280:DC%2BD3M%2FktFemtA%3D%3D Occurrence Handle10.1136/jmg.37.11.866

    Article  PubMed  CAS  Google Scholar 

  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, 41

    Google Scholar 

  27. RG Hagerty PN Butow PA Ellis EA Lobb S Pendlebury N Leighl et al. (2004) ArticleTitleCancer patient preferences for communication of prognosis in the metastatic setting J Clin Oncol 22 IssueID9 1721–30 Occurrence Handle15117995 Occurrence Handle10.1200/JCO.2004.04.095

    Article  PubMed  Google Scholar 

  28. AA Andermann EK Watson AM Lucassen J Austoker (2001) ArticleTitleThe opinions, expectations and experiences of women with a family history of Breast Cancer who consult their GP and are referred to secondary care Commun Genet 4 IssueID4 239–43 Occurrence Handle10.1159/000064199

    Article  Google Scholar 

  29. EA Lobb PN Butow A Barratt B Meiser C Gaff MA Young et al. (2004) ArticleTitleCommunication and information-giving in high-risk breast cancer consultations: influence on patient outcomes Br J Cancer 90 IssueID2 321–7 Occurrence Handle14735171 Occurrence Handle1:STN:280:DC%2BD2c%2Fjtl2qtQ%3D%3D Occurrence Handle10.1038/sj.bjc.6601502

    Article  PubMed  CAS  Google Scholar 

  30. EA Lobb PN Butow B Meiser A Barratt C Gaff MA Young et al. (2003) ArticleTitleWomen’s preferences and consultants’ communication of risk in consultations about familial breast cancer: impact on patient outcomes J Med Genet 40 IssueID5 e56 Occurrence Handle12746410 Occurrence Handle1:STN:280:DC%2BD3s3jt1Ghsw%3D%3D Occurrence Handle10.1136/jmg.40.5.e56

    Article  PubMed  CAS  Google Scholar 

  31. JM Satagopan K Offit W Foulkes ME Robson S Wacholder CM Eng et al. (2001) ArticleTitleThe lifetime risks of breast cancer in Ashkenazi Jewish carriers of BRCA1 and BRCA2 mutations Cancer Epidemiol Biomarkers Prev 10 IssueID5 467–73 Occurrence Handle11352856 Occurrence Handle1:CAS:528:DC%2BD3MXktlClu7s%3D

    PubMed  CAS  Google Scholar 

  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 2004

    Google Scholar 

  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–R216

    Google Scholar 

  34. MC Southey AA Tesoriero CR Andersen KM Jennings SM Brown GS Dite et al. (1999) ArticleTitleBRCA1 Mutations and other sequence variants in a population-based sample of Australian women with breast cancer Br J Cancer 79 IssueID1 34–9 Occurrence Handle10408690 Occurrence Handle1:CAS:528:DyaK1MXmvVKlsQ%3D%3D Occurrence Handle10.1038/sj.bjc.6690008

    Article  PubMed  CAS  Google Scholar 

  35. C Hughes A Gomez-Caminero J Benkendorf et al. (1997) ArticleTitleEthnic differences in knowledge and attitudes about BRCA1 testing in women at increased risk Patient Educ Couns 32 IssueID1–2 51–62 Occurrence Handle9355572 Occurrence Handle1:STN:280:DyaK1c%2FhslajtA%3D%3D Occurrence Handle10.1016/S0738-3991(97)00064-5

    Article  PubMed  CAS  Google Scholar 

  36. C Lerman B Biesecker JL Benkendorf et al. (1997) ArticleTitleControlled trial of pretest education approaches to enhance informed decision-making for BRCA1 gene testing J Natl Cancer Inst 89 IssueID2 148–57 Occurrence Handle8998184 Occurrence Handle1:STN:280:DyaK2s7lt1amsA%3D%3D Occurrence Handle10.1093/jnci/89.2.148

    Article  PubMed  CAS  Google Scholar 

  37. Spielberg. Manual for the State Trait Anxiety Inventory. Palo Alto, CA, USA: Consulting Psychologists Press, 1983

Download references

Author information

Authors and Affiliations

Authors

Corresponding author

Correspondence to John L. Hopper.

Rights and permissions

Reprints and permissions

About this article

Cite this article

Apicella, C., Peacock, S.J., Andrews, L. et al. Determinants of Preferences for Genetic Counselling in Jewish Women. Familial Cancer 5, 159–167 (2006). https://doi.org/10.1007/s10689-005-3871-7

Download citation

  • Received:

  • Accepted:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s10689-005-3871-7

Keywords

Navigation