Exploring the requirements for a decision aid on familial breast cancer in the UK context: a qualitative study with patients referred to a cancer genetics service

Iredale, Rachel, Rapport, Frances, Sivell, Stephanie ORCID: https://orcid.org/0000-0003-0253-1860, Jones, Wendy, Edwards, Adrian G. ORCID: https://orcid.org/0000-0002-6228-4446, Gray, Jonathon and Elwyn, Glyn ORCID: https://orcid.org/0000-0002-0917-6286 2008. Exploring the requirements for a decision aid on familial breast cancer in the UK context: a qualitative study with patients referred to a cancer genetics service. Journal of Evaluation in Clinical Practice 14 (1) , pp. 110-115. 10.1111/j.1365-2753.2007.00811.x

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Abstract

Rationale Patients concerned about a family history of breast cancer can face difficult decisions about screening, prophylactic surgery and genetic testing. Decision aids can facilitate patient decision making and currently include leaflets and computerized tools. These are largely aimed at the North American market. However, no decision aids concerning familial breast cancer exist in the UK. Methods Focus groups were held with 39 women over 18 years of age referred to a cancer genetics clinic, and who had been given a risk assessment for developing breast cancer. Each focus group examined three existing North American decision aids (1 paper-based and 2 CD-ROMs) and explored what a decision aid in a UK context should look like and the information it should contain. Results There was enthusiasm for the development of decision aids that suit the local context in terms of its health care policy, in paper-based and CD-ROM formats. This paper identifies areas of agreement and disagreement in terms of both content and presentation styles, and also reports some of the suggestions received about where, when and with whom decision aids should be used. Participants suggested that decision aids would be most effective when they allowed a user-selected range of formats. Conclusion There is still significant unmet demand for information and decision support in the context of publicly funded health care. The patient perspective provides a unique insight into issues of design, style and communication.

Item Type:	Article
Date Type:	Publication
Status:	Published
Schools:	Medicine
Subjects:	Q Science > QH Natural history > QH426 Genetics R Medicine > R Medicine (General) R Medicine > RC Internal medicine > RC0254 Neoplasms. Tumors. Oncology (including Cancer)
Uncontrolled Keywords:	cancer genetics, decision aids, familial breast cancer, qualitative research
Publisher:	Wiley-Blackwell
ISSN:	1356-1294
Last Modified:	06 Nov 2022 13:17
URI:	https://orca.cardiff.ac.uk/id/eprint/26523

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