A NEW CLINICAL GUIDELINE (2007) AND NATIONAL AWARENESS CAMPAIGN (2011) ACCELERATED BRAIN TUMOUR DIAGNOSIS IN UK CHILDREN (HEADSMART - BE BRAIN TUMOUR AWARE)

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Abstract

BACKGROUND: Public and professional concern about delays in diagnosis of childhood brain tumours has led to new referral guidelines and a public health campaign to raise awareness of the early features of brain tumours and the need for timely imaging. We believe this is a “world first attempt” to accelerate childhood cancer diagnosis at the primary-secondary care interface. METHODS: We investigated the referral pathways of children with a brain tumour 1989-2013 using (a) cancer registrations linked to routine records from primary care (Clinical Practice Research Datalink) and secondary care (Hospital Episode Statistics), (b) referral practice data from a multi-centre audit, and (c) data on total diagnostic interval (TDI) from a national service evaluation of HeadSmart. RESULTS: In a cohort of 181 patients (England, 1989-2006), primary care consultation rates rose 40-fold, from 3.1 per 100 person-months (pm) one year before diagnosis to 148.9 at diagnosis. In a cohort of 3,959 patients (England, 1997-2006), hospital admission rates rose 100-fold, from 1.3 per 100pm at one year before diagnosis to 134.0 at diagnosis. Emergency admissions rose from 35% to 55%. Long delays, repeated presentations in primary care and many ineffective referrals, especially in patients with low-grade brain tumours, were also identified in a multi-centre audit (2006). Headaches or convulsions were the commonest first symptoms at age 4+ years. Ophthalmic signs were more prominent in younger children, and changed most between onset (23% of patients) and diagnosis (46%). Raised intracranial pressure was the most common hospital presentation (40% of patients). During the period 2006-11, the median TDI fell by 53%, from 13.4 to 6.3 weeks. The greatest impact of HeadSmart is a 65% reduction in median interval between first clinical contact and diagnosis (P < 0.01; 730 children in 19 UK specialist centres, 2011-13). CONCLUSIONS: Longer total diagnostic intervals (TDI) were associated with slower-growing tumours, repeated presentations to primary care, ineffective referrals to hospitals and increasing likelihood of urgent admission. The referral guidance and awareness campaign shortened the interval from first contact to scanning, suggesting that professional awareness was enhanced. The campaign is ongoing, and it will be disseminated to primary care in 2013-14. TDI data are now collected routinely as part of UK cancer registration. SECONDARY CATEGORY: Pediatrics.

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