A discrete choice experiment of preferences for genetic counselling among Jewish women seeking cancer genetics services

Abstract

To determine which aspects of breast cancer genetic counselling are important to Ashkenazi Jewish women, a discrete choice experiment was conducted. Participants consisted of 339 Australian Ashkenazi Jewish women who provided a blood sample for research used to test for Ashkenazi Jewish ancestral mutations in the genes BRCA1 and BRCA2, and were offered their genetic test result through a cancer genetics service. Main outcome measures were women's preferences for, and trade-offs between, the genetic counselling aspects of providing cancer, gene, and risk information (information); giving advice about cancer surveillance (surveillance); preparing for genetic testing (preparation); and, assistance with decision-making (direction). Respondents most valued information, about twice as much as advice about surveillance, four times as much as preparation for testing, and nine times as much as assistance with decision-making, which was least valued. Women's preferences were consistent with the major goals of genetic counselling, which include providing information and surveillance advice, and avoiding direction by facilitating autonomous decision-making. There were differences between the women in which aspects they most favoured, suggesting that counselling that elicits and responds to clients' preferences is more likely to meet clients' needs.

Screening of high-risk groups for breast and ovarian cancer in Europe: a focus on the Jewish population

“…These were reviewed in extenso. References [19,34,46,47,58,59,64,68,69,73,74,77,78] were combined by two or three when they were from the same center with the same target group, as indicated in the tables. Reference [79] provided background statistical data about Israel.…”

“…In Australia, Ashkenazi women at high risk for breast or ovarian cancer or who had incurred either of these malignancies chose information about cancer risk as the preferred topic to be addressed by genetic clinics [77,78].…”

“…Eleven groups of studies dealt with psychosocial aspects of genetic testing for breast and ovarian cancer among Jewish women: two from Israel [53,62], seven from the US [64,[67][68][69][70][71][72][73][74][75] and two from Australia [76][77][78] (Table 1). No studies were found on these topics for Jewish women in Europe.…”

“…Apicella [77] Peacock [78] attend scheduled mammography among Jewish Israeli women of low to middle-income [50]. Lack of referral and lack of knowledge were cited most often as barriers among women in Beersheba [56].…”

Conjoint Analysis Applications in Health—a Checklist: A Report of the ISPOR Good Research Practices for Conjoint Analysis Task Force

“…Conjoint analysis has been applied successfully to measuring preferences for a diverse range of health applications. Examples include cancer treatments [15,16]; human immunodeficiency virus prevention [17], testing [18], and treatment [19]; dermatology services [20]; asthma medications [21]; genetic counseling [22,23]; weight-loss programs [24]; diabetes treatment [25] and prevention [26]; colorectal cancer screening [3,8]; depression [27]; and treatments for Alzheimer's disease [28].…”