Determinants of Preferences for Genetic Counselling in Jewish Women
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.
KeywordsAshkenazi breast cancer BRCA1 BRCA2 client preferences genetic counselling
Unable to display preview. Download preview PDF.
- 3.Neumann, J, Morgenstern, O 1947Theory of Games and Economic Behaviour2nd ed.Princeton University PressPrinceton, NJGoogle Scholar
- 4.Savage, LJ 1954The Foundations of StatisticsWileyNew YorkGoogle Scholar
- 5.Luce, RD, Raiffa, H 1957Games and DecisionsWileyNew YorkGoogle Scholar
- 6.Gold MR, Siegel JE, Russell LB, Weinstein MC (eds). Cost-Effectiveness in Health and Medicine. New York: Oxford University Press, 1996Google 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, 1994Google 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, 2000Google 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): 203–5Google Scholar
- 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
- 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
- 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.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
- 37.Spielberg. Manual for the State Trait Anxiety Inventory. Palo Alto, CA, USA: Consulting Psychologists Press, 1983Google Scholar