abstract: Key messages for communicating information about BRCA1 and BRCA2 to women with breast or ovarian cancer: consensus across health professionals and service users - Jacobs - Psycho-Oncology
testing of cancer predisposing genes will increasingly be needed in
oncology clinics in order 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.
were 16 expert health professionals specialising in oncology/genetics
and 16 service users with breast/ovarian cancer and a pathogenic BRCA1/BRCA2
variant. On-line 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 three rounds were circulated. Consensus was
reached when there was ≥75% agreement.
key messages were agreed by both groups with seven of the key messages
agreed by ≥95% of participants: dominant inheritance, the availability
of predictive testing, the importance of pre-test 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 pre- and post genetic testing.
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.