title: 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.
abstract: BACKGROUND
  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.
  
  
  CONCLUSIONS
  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.
authors.affiliation: Institute of Medical Genetics, Cardiff University School of Medicine, Cardiff, UK. Rachel.Iredale@cardiffandvale.wales.nhs.uk
authors.forename: Rachel
authors.initials: R
authors.lastname: Iredale
authors.forename: Frances
authors.initials: F
authors.lastname: Rapport
authors.forename: Stephanie
authors.initials: S
authors.lastname: Sivell
authors.forename: Wendy
authors.initials: W
authors.lastname: Jones
authors.forename: Adrian
authors.initials: A
authors.lastname: Edwards
authors.forename: Jonathon
authors.initials: J
authors.lastname: Gray
authors.forename: Glyn
authors.initials: G
authors.lastname: Elwyn
mesh_terms: D000328:Adult; D001943:Breast Neoplasms / Q000235:genetics* / Q000523:psychology*; D016251:CD-ROM; D003661:Decision Support Techniques; D005260:Female; D017144:Focus Groups; D005817:Genetic Counseling / Q000523:psychology*; D005820:Genetic Testing / Q000523:psychology*; D006801:Humans; D010342:Patient Acceptance of Health Care; D010865:Pilot Projects; D036301:Qualitative Research; D012017:Referral and Consultation; D014852:Wales