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Accelerating diagnosis for childhood brain tumours: an analysis of the HeadSmart UK population data
  1. Dhurgshaarna Shanmugavadivel1,
  2. Jo-Fen Liu1,
  3. Laura Murphy1,
  4. Sophie Wilne2,
  5. David Walker1
  6. on behalf of the HeadSmart
    1. 1 Children’s Brain Tumour Research Centre, University of Nottingham, Nottingham, UK
    2. 2 Paediatric Oncology, Nottingham University Hospitals NHS Trust, Nottingham, UK
    1. Correspondence to Dr Dhurgshaarna Shanmugavadivel, University of Nottingham Children's Brain Tumour Research Centre, Nottingham NG7 2UH, UK; shaarnashan{at}doctors.org.uk

    Abstract

    Background 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.

    Methods 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.

    Results 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).

    Conclusions 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.

    • adolescent health
    • epidemiology
    • general paediatrics
    • oncology
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    Footnotes

    • Twitter @HeadSmartFellow

    • Collaborators On behalf of the HeadSmart: Early diagnosis of brain tumours campaign group: Veronica Neefjes, Royal Aberdeen Children’s Hospital; Anthony McCarthy, Royal Belfast Hospital for Sick Children; Martin English, Birmingham Children’s Hospital; Steve Lowis, Rachel Perrow, Bristol Royal Hospital for Children; Matthew Garnett, Addenbrooke’s Hospital; Cathy Morley Jacob, Heidi Traunecker, Children’s Hospital for Wales; Jane Pears, Our Lady’s Children’s Hospital; Alf Nicholson, Temple Street Children’s University Hospital; Hamish Wallace, Mark Brougham, Royal Hospital for Sick Children, Edinburgh; Jairam Sastry, Royal Hospital for Sick Children, Glasgow; Antony Michalski, Great Ormond Street Hospital; Simone Wilkins, Leeds Children’s Hospital; Barry Pizer, James Hayden, Alder Hey Children’s Hospital; Eddy Estlin, Royal Manchester Children’s Hospital; Juliet Hale, The Great North Children’s Hospital; Sophie Wilne, Nottingham Children’s Hospital; Denise Tritton, John Radcliffe Hospital; Darren Hargrave, The Royal Marsden Hospital; Vicki Lee, Sheffield Children’s Hospital.

    • Contributors DW, SW and J-FL designed the study. LM, J-FL and DS analysed the data. DS drafted the manuscript which was reviewed and edited by DW, SW and J-FL.The HeadSmart Clinical Champions submitted data from their centres for the study.

    • Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.

    • Competing interests None declared.

    • Patient consent for publication Not required.

    • Provenance and peer review Not commissioned; externally peer reviewed.

    • Data availability statement No data are available.

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