Background: Hereditary adenomatous polyposis syndromes, including familial adenomatous polyposis and other rare adenomatous polyposis syndromes, increase the lifetime risk of colorectal and other cancers.
Methods: A team of 38 experts convened to update the 2008 European recommendations for the clinical management of patients with adenomatous polyposis syndromes. Additionally, other rare monogenic adenomatous polyposis syndromes were reviewed and added.
In the United Kingdom, genetic counsellors work together with clinical geneticists and clinical scientist colleagues within specialist genetics services, but they also often work in multidisciplinary teams (MDTs) outside of such services. There, they contribute genetic knowledge together with expert understanding of how to communicate genetic information effectively. They can offer education and support to the MDT, while providing management advice for both affected patients and the extended at-risk family members.
View Article and Find Full Text PDFThe Macmillan Cancer Family History Service in Teesside has provided genetic risk assessment for individuals with a personal or family history of cancer since 2004. We sought to examine the effect of risk assessment on patient management, with particular emphasis on referral for clinical screening and selection of families for tertiary genetics assessment. The degree of concordance between the initial risk assignment (using diagnoses reported by the family) and final risk assignment (using confirmed diagnoses) was no greater than 72.
View Article and Find Full Text PDFThe Teesside project took the underlying principle of the Kenilworth model--that people with a family history of cancer should be 'triaged' and signposted to appropriate clinical services--and applied it to a whole clinical cancer network in which inequity was the major driver for change. Unlike the Kenilworth model, the Department of Health/Macmillan Cancer Support-funded pilot project in Teesside embedded genetic risk assessment at secondary care level. The project took a 'bottom up' approach that engaged a wide variety of stakeholder groups and identified key challenges that formed the basis of a clear strategic plan.
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