Key messages for communicating information about BRCA1/2 to women with breast or ovarian cancer

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
 

Objectives

Genetic 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.

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. 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.

Results

Thirty 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.

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.