Accelerating diagnosis for childhood brain tumours: an analysis of the HeadSmart UK population data

HeadSmart, a public and professional awareness campaign, was launched to enhance awareness of brain tumour symptomatology identified in the Royal College of Paediatrics and Child Health, National Institute for Health and Care Excellence-accredited guideline. Quality improvement data showed a reduction in diagnostic interval nationally. To reach the government target of 4 weeks, we need to identify subgroups with ongoing delays.

Incident cases of brain tumours (0-18) diagnosed between January 2011 and May 2013 across 18 UK centres were included. Anonymised data including demographics, diagnosis and date of symptom onset/presentation were collected. Key outcome measures, total diagnostic interval (TDI), patient interval (PI) and system interval (SI) were calculated. Subanalysis by age, tumour grade and location was also performed.

Young children (0-5 years) accounted for 38% of cases, with a peak age at diagnosis of 2 years. Central tumours experienced longest intervals with a median TDI of 10.5 weeks, PI of 3.2 weeks and SI of 2.9 weeks. Craniopharyngioma, low-grade glioma and optic pathway gliomas had the longest TDIs with a median of 15.1, 11.9 and 10.4 weeks, respectively. The greatest proportion of delay was in the SI. The 12-18 age group had a median TDI of 12.1 weeks, compared with 8 weeks for the 5-11 age group and 6 weeks for the 0-5 age group (p<0.001).

Clear patterns of intervals for different age groups and anatomical locations have been demonstrated. Tailoring education and awareness strategies to ensure earlier diagnosis for central tumours and young people is crucial to minimise brain injury, subsequent disability and late effects of treatment for 70% of survivors.