Sporadic implementation of UK familial mammographic surveillance guidelines 15 years after original publication.

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Evans, D Gareth 
Edwards, Maria 
Duffy, Stephen W 
Cancer Genetics Group clinical leads 

The National Institute of health and Care Excellence issued guidelines on familial breast cancer screening in 2004. Such guidelines should be uniformly implemented to ensure that members of the same family with the same level of risk, but living in different areas, have the same access to screening. We assessed uptake by creating a short, six question online survey designed to assess compliance in each regional area. We used this to conduct a survey of all 22 regional genetics services. There was a 100% response to the survey allowing a complete map to be created. The devolved nations had near complete compliance with the sole exception of SW Scotland, but in England the picture was fragmented with regions representing a combined population of 26.6 million (48%) not implementing the full NICE recommendations. Fifteen years after the publication of the original guidelines, major inequity in provision for screening still occurs and a postcode lottery exists for the management of women from families with a history of breast cancer. We estimate that up to 73 preventable breast cancer deaths occur each year due to the current inequity of access. It may be time to consider alternative funding and implementation models to ensure consistent access across the country.

Adult, Breast Neoplasms, Early Detection of Cancer, Female, Genes, BRCA1, Genes, BRCA2, Genes, p53, Guideline Adherence, Health Services Accessibility, Heterozygote, Humans, Magnetic Resonance Imaging, Mammography, Medical History Taking, Middle Aged, Mutation, Practice Guidelines as Topic, Risk Assessment, State Medicine, United Kingdom
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Br J Cancer
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Springer Science and Business Media LLC
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European Research Council (310018)
Funding DGE is supported by the NIHR Manchester Biomedical Research centre (IS-BRC-1215-20007). MT is supported by the NIHR Cambridge Biomedical Research centre. o Authors’ contributions DGE and SWD devised the survey with the help of MT. The survey was e-mailed to all cancer genetics clinical leads for each region through the UK Cancer Genetics Group which is currently chaired by MT. ME collated the survey results. DGE was chair of the 2014 and 2006 NICE guideline group (CG14,CG41) and clinical lead for the 2013 and 2017 updates.