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

D Gareth Evans,Marc Tischkowitz,Maria Edwards,Stephen W Duffy

doi:10.1038/s41416-019-0631-2

Abstract

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.

Highlights

Guidelines are an important mechanism to ensure equitable and evidence-based delivery of medical care
The first National Institute of health and Care Excellence (NICE) guideline group for familial breast cancer was constituted in 2002 and produced its first report in May 2004.6 This recommended that women at moderate and high risk should be ‘offered’ annual mammography screening aged 40–49 years of age
The devolved nations of Wales, Northern Ireland and Scotland had near complete compliance with the NICE recommended mammography screening ‘offer’ with the sole exception of parts of SW Scotland that only screened moderaterisk women 2-yearly (Fig. 1; Table 1)

Summary

Introduction

Guidelines are an important mechanism to ensure equitable and evidence-based delivery of medical care. Women who have seen a mother or sister die from breast cancer before 50 years of age will be concerned about having to wait until age 50, the usual starting age for national programmes to undergo mammography screening.[2] Many countries have produced guidelines including frequently updated guidance in the USA,[3] Netherlands[4] and France.[5] The first NICE guideline group for familial breast cancer was constituted in 2002 and produced its first report in May 2004.6 This recommended that women at moderate (lifetime risk 17–29%; 10-year risk aged 40 of ≥3%) and high risk (lifetime risk ≥30%; 10-year risk aged 40 of ≥8%) should be ‘offered’ annual mammography screening aged 40–49 years of age. 3% of women aged 40 years are at moderate or high-risk of breast cancer based on family history alone,[9] and at least half of these come forward with concerns.[10]

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Discussion

Conclusion