Interactive patient decision aids for women facing genetic testing for familial breast cancer: a systematic web and literature review

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.