Apicella Carmel, Peacock Stuart J, Andrews Lesley, Tucker Katherine, Bankier Agnes, Daly Mary B, Hopper John L
Centre for Molecular, Environmental, Genetic and Analytic Epidemiology, University of Melbourne, Melbourne, Australia.
Fam Cancer. 2006;5(2):159-67. doi: 10.1007/s10689-005-3871-7.
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.
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).
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).
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.
患者偏好是卫生服务经济评估的核心。癌症基因服务相对较新，对于客户的偏好了解甚少。我们试图确定客户对基因服务提供方式的偏好，并找出能够预测这些偏好的因素。
我们研究了参与澳大利亚犹太乳腺癌研究的女性参与者，她们被提供了检测BRCA1和BRCA2基因祖先突变的机会。我们收到了256名女性（回复率76%）填写的问卷，问卷要求受访者对基因咨询的功能或属性按照偏好程度进行排序。
62%的受访者将对癌症和基因风险信息的偏好列为最高；19%将其列为对乳腺癌和卵巢癌监测的偏好；14%将其列为对检测准备的偏好；5%将其列为对决策指导的偏好。大多数人将指导列为最不偏好的属性（53%）。有强烈癌症家族史的女性将信息列为最高偏好的可能性较小（52%），而将检测准备列为最高偏好的可能性较大（22%）（分别为P = 0.04；0.01）。拥有大学学位的女性将监测列为最高偏好的可能性较小（15%）（P = 0.04）。
大多数接受检测的女性对信息的偏好最高，对指导的偏好最低。我们已经确定了能够预测对信息、准备和监测属性最高偏好的因素。了解偏好及其预测因素可能有助于癌症基因服务为客户提供更大的咨询益处。
