Freedman Rebecca, Mountain Helen, Karina Dian, Schofield Lyn
Genetic Services of Western Australia, King Edward Memorial Hospital, Level 4 Agnes Walsh House, Bagot Road, Subiaco, Western Australia, 6008, Australia.
Western Australian Familial Cancer Registry, Genetic Services of Western Australia, King Edward Memorial Hospital, Bagot Road, Subiaco, Australia.
J Genet Couns. 2017 Feb;26(1):52-62. doi: 10.1007/s10897-016-9982-5. Epub 2016 Jun 6.
Global media has the power to influence the ways the public engage with health services. On May 14th 2013, Angelina Jolie published an article in the New York Times magazine, outlining her decision to undergo BRCA mutation testing due to a family history of cancer; then proceed with a mastectomy. The article evoked significant interest from the media and the public. During the months that followed, the Familial Cancer Program (FCP) at Genetic Services of Western Australia (GSWA) experienced a significant increase in referrals and enquiries. Resources were overstretched and it became clear we needed to adjust work practices to manage the escalating numbers. New strategies were devised to cope with the influx of enquiries, albeit without the benefit of additional resources. We conducted an audit of referrals to the FCP made between January 2012 and December 2014. This included a comparison of the months prior to and following the New York Times article. The aim of the audit was to quantify the impact of the "Angelina Jolie effect" on referrals to the FCP. Whilst the increased awareness of the role of genetic services in risk assessment and testing for familial breast and ovarian cancer was considered positive, pre-referral risk assessment at the primary health level to evaluate the appropriateness of their patients for referral could have been helpful. Potentially, many inappropriate referrals to FCP may have been avoided with primary health evaluation thus lessening the burden on our service and preventing unnecessary worry in well women who possessed minimal family history or risk factors. It is important to understand the factors driving the uptake of risk reduction activities, particularly if engagement with a genetics service is considered part of that pathway. Continued education about cancer risk due to family history, individual features and awareness surrounding genetic testing criteria, costs and availability is required for both the public and health professionals.
全球媒体有能力影响公众与医疗服务机构互动的方式。2013年5月14日，安吉丽娜·朱莉在《纽约时报》杂志上发表了一篇文章，讲述了由于家族癌症病史，她决定接受BRCA基因突变检测，然后进行乳房切除术。这篇文章引起了媒体和公众的极大兴趣。在随后的几个月里，西澳大利亚遗传服务机构（GSWA）的家族癌症项目（FCP）收到的转诊和咨询显著增加。资源不堪重负，很明显我们需要调整工作方式来应对不断增加的数量。我们制定了新策略来应对咨询量的涌入，尽管没有额外资源的支持。我们对2012年1月至2014年12月期间转诊至FCP的情况进行了审计。这包括对比《纽约时报》文章发表之前和之后的月份。审计的目的是量化“安吉丽娜·朱莉效应”对转诊至FCP的影响。虽然人们对遗传服务在家族性乳腺癌和卵巢癌风险评估及检测中的作用认识有所提高被认为是积极的，但在初级卫生保健层面进行转诊前风险评估以评估患者转诊的适宜性可能会有所帮助。通过初级卫生保健评估，可能避免许多不适当的转诊至FCP的情况，从而减轻我们服务的负担，并防止家族病史或风险因素极小的健康女性产生不必要的担忧。了解推动采取降低风险活动的因素很重要，特别是如果与遗传服务机构的接触被视为该途径的一部分。公众和卫生专业人员都需要持续接受关于家族病史导致的癌症风险、个体特征以及围绕基因检测标准、成本和可及性的认识方面的教育。
