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Acquired Brain Injury in Childhood – Back to the beginning

Acquired Brain Injury in Childhood – Back to the beginning. Anna Maw Consultant Paediatric Neurologist CUH/CPFT. Overview. Acquired brain injury in childhood Background to this project (what I thought I was going to learn) Project method Findings and thoughts Where next ?.

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Acquired Brain Injury in Childhood – Back to the beginning

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  1. Acquired Brain Injury in Childhood – Back to the beginning Anna Maw Consultant Paediatric Neurologist CUH/CPFT

  2. Overview • Acquired brain injury in childhood • Background to this project (what I thought I was going to learn) • Project method • Findings and thoughts • Where next ?

  3. Acquired Brain Injury in childhood – Background • Lifelong condition with lifelong implications • Recovery and rehabilitation have different aims in childhood – “back to normal” is never enough • Many consequences remain hidden or unrecognised for many years –silent disability

  4. Acquired Brain Injury – Complex needs in a complex system Behaviour Impulsivity Poor concentration Social judgement Planning and organisation Impairment Physical disability Mood Cognition Behaviour Consequences Loss of social participation Family strain School failure Offending behaviour Youth Justice Social Care Health Third Sector Education Increased contact with services DEVELOPMENT

  5. Who gets severe acquired brain injury? • How do they injure their brains? • What problems and deficits are they left with? • What is their service user journey? • What service needs do they have? • What is the best configuration of services to meet those needs? www.inclusivedesigntoolkit.com www.inclusivedesigntoolkit.com

  6. Paediatric Intensive Care Unit (PICU) Data • Aim to identify • children with first presentation of a condition which carries a significant risk of acquired brain injury. • PICU admission as a proxy marker of severity. • Admission data from 2007-2011 • 2723 admissions • Phase 1 – exclude all children with clearly unrelated conditions • Phase 2 – exclude re-admissions, elective admissions, children who died on PICU and children with primary oncology diagnosis • Phase 3 – group children into broad diagnostic categories • Phase 4 – review electronic medical records, lab results, imaging – CT, MRI of each case to ensure correct diagnosis. Further exclusions • Final cohort 253 childrenage 0-16 • 154 boys, 99 girls

  7. Acquired Brain Injury by diagnosis

  8. Young patients • Very severely injured • High mortality – 10 died • Global brain injury • High level of physical need • 13 of 19 patients are aged 2 or under.

  9. Lancet Neurol. 2012 Sep;11(9):774-83. Epub 2012 Aug 3. Outcomes of invasive meningococcal serogroup B disease in children and adolescents (MOSAIC): a case-control study. Viner RM, Booy R, Johnson H, Edmunds WJ, Hudson L, Bedford H, Kaczmarski E, Rajput K, Ramsay M, Christie D • about a tenth have major disabling deficits • more than a third have one or more deficits in physical, cognitive, and psychological functioning, with the additional burden of memory deficits and executive function problems

  10. Traumatic Brain Injury - 130 cases

  11. 30% are under 1 year 46% are age 4 or under What do we tell them about the lifetime risk of problems? How do we keep track of them over time?

  12. Who gets severe acquired brain injury? How do they injure their brains? What problems and deficits are they left with? What service needs do they have? What is their service user journey? What is the best configuration of services to meet those needs?

  13. Many thanks to: Andrew Bateman Tony Holland Fergus Gracey Terry Dickerson Cecily Morrison

  14. Acquired Brain Injury Pathway for Children Discuss with local team - named contact for each locality • Initial high intensity nursing care • Ongoing specialist therapy input • Discuss with commissioners • Community Paediatrics • Neurology • Endocrine • CCPNR • Third sector • Adult services • Assessment and Discharge Planning tool – Pilot • MDT with 2-3 weeks notice, involving local team • CBIT child and family worker ABI Passport

  15. Usually focal brain injury • May make a good early physical recovery • Risk of significant cognitive difficulties • Lots of research data on stroke • No reports in the literature relating to outcome following abscesses in children. Personasamples

  16. CLAHRC • NIHR Project • 9 collaborations around the country • research focused on the needs of patients and service users • to support the translation of research evidence into practice in the NHS • Emphasis on Mental Health

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