Williams Lisa, Jones Wendy, Elwyn Glyn, Edwards Adrian
Department of General Practice, Centre for Health Sciences Research, School of Medicine, Cardiff University, Cardiff, UK.
J Eval Clin Pract. 2008 Feb;14(1):70-4. doi: 10.1111/j.1365-2753.2007.00798.x.
A systematic review to identify and appraise interactive decision aids that are designed for consumer use, in the field of hereditary breast cancer and genetic testing.
An Internet (Google, Alta Vista) and literature search (Medline) was conducted for suitable decision aids. The decision aid had to (inclusion criteria): be about genetic testing for familial breast cancer; fulfil the criteria of a decision aid; use multimedia IT; be interactive (user does something that influences the decision pathway); and be for patient/public use. Exclusion criteria were decision aids that: had no interactivity (e.g. leaflet, video); discussed management decisions after gene status confirmed; non-English; aids that required membership/subscription. Once aids had been selected for further appraisal they were assessed against a recognized framework for the evaluation of decision aids--the International Patient Decision Aid Standards (IPDAS) criteria.
On Google 595 web pages were assessed, as were 382 Google directory entries. Alta Vista revealed fewer results and revealed no new sites. Twenty-four web sites and four CD-ROMs with the most potential as stand alone decision aids were then selected for further assessment. On Medline 776 citations were reviewed, of these only one CD-ROM and no web sites were found. After initial appraisal only two CD-ROMs and one web site met the criteria for further consideration. Assessed against the IPDAS criteria, the decision aids scored poorly with no aid scoring more than 50%.
Although there is a significant amount of interest in genetic testing to determine whether a woman is at high risk of breast cancer, the current genetic services are having difficulty coping with the demand. Alternatives such as decision aids have been suggested. There are many sources of information available, but few are truly interactive or designed for patient use. Of the three evaluated, all were from the USA and are likely to require modification for patients elsewhere.
进行一项系统评价，以识别和评估在遗传性乳腺癌和基因检测领域为消费者设计的交互式决策辅助工具。
通过互联网（谷歌、阿尔塔Vista）和文献检索（医学索引）查找合适的决策辅助工具。决策辅助工具必须（纳入标准）：是关于家族性乳腺癌的基因检测；符合决策辅助工具的标准；使用多媒体信息技术；具有交互性（用户的操作会影响决策路径）；供患者/公众使用。排除标准为：无交互性的决策辅助工具（如传单、视频）；讨论基因状态确认后的管理决策；非英文；需要会员资格/订阅的辅助工具。一旦选定辅助工具进行进一步评估，就根据公认的决策辅助工具评估框架——国际患者决策辅助工具标准（IPDAS）标准对其进行评估。
在谷歌上评估了595个网页，382个谷歌目录条目也进行了评估。阿尔塔Vista显示的结果较少，且未发现新网站。然后选择了24个网站和4个最有潜力作为独立决策辅助工具的光盘进行进一步评估。在医学索引上检索了776条引文，其中仅找到1个光盘，未找到网站。初步评估后，只有2个光盘和1个网站符合进一步考虑的标准。根据IPDAS标准进行评估，决策辅助工具得分较低，没有一个辅助工具得分超过50%。
尽管对于通过基因检测确定女性是否患乳腺癌高危有极大兴趣，但当前的基因服务难以满足需求。有人建议采用决策辅助工具等替代方法。有许多信息来源，但真正具有交互性或为患者设计的却很少。在评估的三个工具中，全部来自美国，可能需要针对其他地区的患者进行修改。
