Maddock C, Schrijvers D, Turco Mrd, Marotti L, Sullivan R
On Behalf of TENOVUS, Cardiff, UK.
Ecancermedicalscience. 2011;5:239. doi: 10.3332/ecancer.2011.239. Epub 2011 Dec 13.
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).
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.
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.
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.
乳腺癌是女性中最常被诊断出的癌症，也是癌症死亡的主要原因，其中5%-10%的乳腺癌发生在因遗传突变而患病的女性身上。对于临床医生和患者而言，与家族性癌症相关的“风险”一词可能有多种含义。未能识别和解决这一问题可能会损害有效的沟通和明智的决策，并对患者护理质量产生不利影响。欧洲癌症沟通项目的这项研究旨在探索患者在乳腺癌风险沟通方面的经历，并研究一种通过拍摄圆桌讨论（RTD）来分享这些经历的机制。
对六位有家族性乳腺癌经历或与之有某种关联的女性进行了拍摄的圆桌讨论。纳入标准包括愿意且有能力用英语参与讨论，并准备好在网上进行讨论，以便其他人有机会观看和评论。
主要研究结果以圆桌讨论中出现的关键主题和问题呈现。该小组在整体风险沟通流程改进的必要性上达成了一致，特别是在信息的进一步传播方面，即“告知家人”。在“想知道”自己的基因状况方面存在差异。
叙述中对癌症风险的认知不仅源于风险的表述方式，还源于家族病史、个人经历、文化规范和信仰，因此，采取多方面的风险沟通方法来解决这些问题对于确保患者充分理解潜在风险是必要的。在关注患者信息需求时，需要在特定时间个人所需信息的水平和数量之间找到平衡，沟通者需要能够据此调整信息。
