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To implement the “Diagnosis of Brain Tumours in Children” guideline and reduce delays in diagnosis in childhood brain tumours
  1. DA Walker1,8,
  2. N Dickson2,8,
  3. J Collier3,8,
  4. CR Kennedy4,8,
  5. RG Grundy1,8,
  6. J Punt1,8,
  7. S Wilne1,8,
  8. M Lakhanpaul5,8,
  9. M Baker6,8,
  10. J Trusler2,8,
  11. P Carbury2,8,
  12. S Lindsell2,8,
  13. J Dudley7,8
  1. 1Children's Brain Tumour Research Centre, Division of Human Development, University of Nottingham, Nottingham, UK
  2. 2Samantha Dickson Brain Tumour Trust, Hampshire, UK
  3. 3School of Allied Health Professionals, University of East Anglia, Norwich, UK
  4. 4Division of Clinical Neurosciences, School of Medicine, University of Southampton, Southampton, UK
  5. 5Department of Medical and Social Care Education, University of Leicester, Leicester, UK
  6. 6Royal College of General Practitioners, London, UK
  7. 7Department of Paediatric Nephrology, Bristol Royal Hospital of Children, Bristol, UK
  8. 8The HeadSmart campaign, a Health Foundation, Closing the Gap Project

Abstract

Introduction The RCPCH endorsed Brain Pathways Guideline (www.headsmart.org.uk) for selecting patients for scanning with symptoms of brain tumour has been a sustained collaboration between Children's Brain Tumour Research Centre (CBTRC), Samantha Dickson Brain Tumour Trust (SDBTT), University of Southampton and the RCPCH. The clinical guideline and the HeadSmart Campaign aim to reduce median symptom interval (SI) for UK children to 5 weeks, by enhancing public and professional awareness and offering web-based support for selection of children for scanning, observation or reassurance. The strategy was developed in response to:

  • delays in diagnosis observed by specialists;

  • media reports of delays;

  • questions in the House of Commons;

  • the All Party Parliamentary Group Manifesto (2010), which placed delays in diagnosis as its top action point.

Aims The HeadSmart campaign aims to reduce SI to a median of 5 weeks, to equal the best reported worldwide. It is supported by a decision support website, a Clinical Champions' network recording SI for newly diagnosed patients, and an evaluation programme; a Health Economic model is in development.

Methods CBTRC developed a research strategy, SDBTT identified funding from Community Fund (2002). A literature review, meta-analysis of reported symptom intervals and a Delphi consensus process generated the Clinical Guideline which was endorsed by RCPCH (2005) and supported by other Colleges, accredited by NHS Evidence and is being considered within NICE Cancer Referral Guidance review. The dissemination strategy included:

  • Survey of healthcare professionals' awareness of childhood brain tumours and the HeadSmart campaign

  • Survey of public awareness of childhood brain tumours and the HeadSmart campaign

  • Development of the HeadSmart website

  • Presentation of guideline material at regional and national professional meetings

  • Recruitment of clinical champions

  • Media campaign – television, radio and facebook

Concurrent government reports have prioritised timely diagnosis and access to treatment and justify prioritisation of children within health service developments.

Conclusions This approach is enhancing awareness of clinical presentations of a rare but important childhood condition in primary and secondary care. Early results (see linked abstracts) show promising reduction in SI, the campaign will run until 2013. This model of prioritising diagnostics in children may be applicable to other childhood conditions.

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