To know or not to know? Not the only question in familial breast cancer risk communication

BACKGROUND: Breast cancer is the most frequently diagnosed cancer and the leading cause of cancer death in females, 5–10% of these breast cancers occur in women because of an inherited mutation. The term ‘risk’ in relation to familial cancer can have multiple meanings for both clinicians and patients. Failing to identify and address this may impair effective communication and informed decision making and adversely affect the quality of patient care. The aim of this research for the Eurocancercoms project was to explore patients' experience of risk communication in breast cancer and to investigate a mechanism for sharing these experiences using a filmed round-table discussion (RTD). METHODS: A filmed RTD with six women who had experience of, or some connection with familial breast cancer was conducted. Criteria for inclusion included a willingness and ability to participate in the discussion in English and to be prepared for the discussion to be hosted online with opportunities for others to view and comment. RESULTS: The main findings are presented as key themes and issues arising from the RTD. There was consistency in the group on the need for improvements to the risk communication process as a whole and in particular around onward diffusion of information i.e. ‘Telling the family’. There were differences regarding ‘wanting to know’ their genetic status. CONCLUSIONS: The perception of cancer risk in the narratives stems not only from the way risks are stated, but from family history, personal experiences, cultural norms and beliefs and therefore a multifaceted approach to risk communication addressing these issues is necessary to ensure the patient fully understands the potential risks. There is a balance when attending to patient's information needs, as to what level and amount of information is required by the individual at a particular time and communicators need to be able to tailor information accordingly.