title: Key messages for communicating information about BRCA1 and BRCA2 to women with breast or ovarian cancer: Consensus across health professionals and service users.
abstract: BACKGROUND
  Genetic testing of cancer predisposing genes will increasingly be needed in oncology clinics to target cancer treatment. This Delphi study aimed to identify areas of agreement and disagreement between genetics and oncology health professionals and service users about the key messages required by women with breast/ovarian cancer who undergo BRCA1/BRCA2 genetic testing and the optimal timing of communicating key messages.
  
  
  METHODS
  Participants were 16 expert health professionals specialising in oncology/genetics and 16 service users with breast/ovarian cancer and a pathogenic BRCA1/BRCA2 variant. Online questionnaires containing 53 inductively developed information messages were circulated to the groups separately. Participants rated each message as key/not key on a Likert scale and suggested additional messages. Questionnaires were modified according to the feedback and up to 3 rounds were circulated. Consensus was reached when there was ≥75% agreement.
  
  
  RESULTS
  Thirty key messages were agreed by both groups with 7 of the key messages agreed by ≥95% of participants: dominant inheritance, the availability of predictive testing, the importance of pretest discussion, increased risk of breast and ovarian cancer, and the option of risk-reducing mastectomy and bilateral salpingo-oophorectomy. Both groups agreed that key messages should be communicated before genetic testing and once a pathogenic variant has been identified.
  
  
  CONCLUSIONS
  There was a high level of agreement within and between the groups about the information requirements of women with breast/ovarian cancer about BRCA1/BRCA2. These key messages will be helpful in developing new approaches to the delivery of information as genetic testing becomes further integrated into mainstream oncology services.
authors.affiliation: Research Department of Clinical, Education and Health Psychology, University College London, London, UK.
authors.forename: Chris
authors.identifier: http://orcid.org/0000-0002-9557-9080
authors.initials: C
authors.lastname: Jacobs
authors.affiliation: London Bridge Hospital, London, UK.
authors.forename: Gabriella
authors.initials: G
authors.lastname: Pichert
authors.affiliation: Breast Cancer Care, London, UK.
authors.forename: Jackie
authors.initials: J
authors.lastname: Harris
authors.affiliation: Prince of Wales Hospital, Sydney, Australia.
authors.forename: Kathy
authors.initials: K
authors.lastname: Tucker
authors.affiliation: University College London, London, UK.
authors.forename: Susan
authors.initials: S
authors.lastname: Michie
mesh_terms: D019313:BRCA1 Protein; D024682:BRCA2 Protein; D001943:Breast Neoplasms / Q000235:genetics* / Q000523:psychology / Q000601:surgery; D003142:Communication; D032921:Consensus; D003697:Delphi Technique; D005260:Female; D019398:Genes, BRCA1; D024522:Genes, BRCA2; D005817:Genetic Counseling; D020022:Genetic Predisposition to Disease; D005820:Genetic Testing; D006801:Humans; D008408:Mastectomy; D008875:Middle Aged; D010051:Ovarian Neoplasms / Q000235:genetics* / Q000523:psychology / Q000601:surgery; D010052:Ovariectomy; D017410:Practice Guidelines as Topic; D019984:Quality Indicators, Health Care; D012306:Risk; D011795:Surveys and Questionnaires
chemical_list: D019313:BRCA1 Protein; C492913:BRCA1 protein, human; D024682:BRCA2 Protein; C551750:BRCA2 protein, human
keywords: BRCA1/BRCA2; breast/ovarian cancer; genetic testing; key messages; oncology/genetics health professionals; pre/post genetic test information