Key messages for communicating information about BRCA1 and BRCA2 to women with breast or ovarian cancer: Consensus across health professionals and service users.
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.
['Jacobs|Chris|C|http://orcid.org/0000-0002-9557-9080', 'Pichert|Gabriella|G|', 'Harris|Jackie|J|', 'Tucker|Kathy|K|', 'Michie|Susan|S|']
D019313:BRCA1 Protein D024682:BRCA2 Protein D001943:Breast Neoplasms 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 D010052:Ovariectomy D017410:Practice Guidelines as Topic D019984:Quality Indicators, Health Care D012306:Risk D011795:Surveys and Questionnaires
key messages genetic testing breast/ovarian cancer BRCA1/BRCA2 oncology/genetics health professionals pre/post genetic test information