Mackay James, Schulz Peter, Rubinelli Sara, Pithers Andrea
Department of Biology, University College London, Gower Street, London WC1E 6BT, UK.
Patient Educ Couns. 2007 Aug;67(3):261-6. doi: 10.1016/j.pec.2007.04.001. Epub 2007 Jun 21.
Many people are concerned about their family history of breast cancer, and are anxious about the possibility of developing breast cancer themselves. The majority of these people are likely not to be at significantly increased risk of developing inherited breast cancer. All women are at risk of developing sporadic breast cancer, and this risk increases with age. This project aims to aid people's understanding of these issues using an interactive online computer programme.
The UK National Institute of Health and Clinical Excellence has published guidance for the National Health Service on the management of familial breast cancer. That guidance lays down clear criteria for categorising risk level and the appropriate management options. We have developed a user-friendly computer programme named OPERA (online patient education and risk assessment) which captures the individuality of the user's situation in a comprehensive way, and then produces personalised information packages, building on the theoretical framework of argumentation developed by Toulmin [Toulmin S. The uses of argument. Cambridge, MA: Cambridge University Press; 1958]. We will test this programme in a series of pilot studies commencing in 2007.
This paper describes the progress of this project to date and focuses on the design of the programme.
It is possible to construct a user friendly programme which delivers a personalised information package to individuals who are concerned about their risk of developing breast cancer.
This user friendly programme needs to be tested within a series of carefully thought out pilot studies before it is ready for general release and use by the public.
许多人担心自己的乳腺癌家族史,并对自身患乳腺癌的可能性感到焦虑。这些人中的大多数可能并没有显著增加患遗传性乳腺癌的风险。所有女性都有患散发性乳腺癌的风险,且这种风险会随着年龄的增长而增加。本项目旨在通过一个交互式在线计算机程序帮助人们理解这些问题。
英国国家卫生与临床优化研究所已发布关于家族性乳腺癌管理的指导意见,供国民医疗服务体系参考。该指导意见明确了风险水平分类及相应管理方案的标准。我们开发了一个名为OPERA(在线患者教育与风险评估)的用户友好型计算机程序,它以全面的方式捕捉用户情况的个体差异,然后在图尔敏(Toulmin S. The uses of argument. Cambridge, MA: Cambridge University Press; 1958)提出的论证理论框架基础上生成个性化信息包。我们将在2007年开始的一系列试点研究中对该程序进行测试。
本文描述了该项目迄今为止的进展情况,并重点介绍了程序的设计。
有可能构建一个用户友好型程序,为担心患乳腺癌风险的个人提供个性化信息包。
在准备好向公众全面发布和使用之前,这个用户友好型程序需要在一系列精心设计的试点研究中进行测试。