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

Journal of Evaluation in Clinical Practice
Lisa WilliamsAdrian Edwards

Abstract

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 w...Continue Reading

References

Jan 20, 1999·European Journal of Cancer : Official Journal for European Organization for Research and Treatment of Cancer (EORTC) [and] European Association for Cancer Research (EACR)·P Hopwood
Sep 7, 2002·Genetic Testing·Celette Sugg SkinnerBarbara K Rimer
Sep 27, 2003·BMJ : British Medical Journal·Gerd Gigerenzer, Adrian Edwards
Jan 22, 2004·British Journal of Cancer·M S van RoosmalenW A J van Daal
Feb 28, 2004·Expert Reviews in Molecular Medicine·Jan-Luuk Hillebrands, Jan Rozing
Feb 4, 2005·American Journal of Medical Genetics. Part a·Catharine WangSofia D Merajver
Apr 19, 2005·Genetics in Medicine : Official Journal of the American College of Medical Genetics·Michael J GreenDavid T Mauger
Apr 20, 2005·Expert Reviews in Molecular Medicine·Nicola J Curtin
Aug 16, 2006·BMJ : British Medical Journal·Glyn ElwynUNKNOWN International Patient Decision Aids Standards (IPDAS) Collaboration
Aug 17, 2006·Health Expectations : an International Journal of Public Participation in Health Care and Health Policy·Frances RapportGlyn Elwyn

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Citations

Jan 22, 2008·Patient Education and Counseling·A EdwardsH Thornton
Nov 29, 2015·Journal of Medical Internet Research·Wim G GroenWim H van Harten
Jun 26, 2009·Current Opinion in Psychiatry·Linda D Cameron, Cecile Muller

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