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Requirements for and current provision of rehabilitation services for children after severe acquired brain injury in the UK: a population-based study
  1. Louise Hayes1,
  2. Simon Shaw2,
  3. Mark S Pearce1,
  4. Rob J Forsyth2,3
  1. 1 Institute of Health and Society, Newcastle University, Newcastle upon Tyne, UK
  2. 2 Royal National Orthopaedic Hospital NHS Trust, Stanmore, UK
  3. 3 Institute of Neuroscience, Newcastle University, Newcastle upon Tyne, UK
  1. Correspondence to Dr Rob J Forsyth, Institute of Neuroscience, Newcastle University, Sir James Spence Institute, Royal Victoria Infirmary, Newcastle upon Tyne NE1 4LP, UK; rob.forsyth{at}


Objectives Survival with brain injury is an outcome of severe illness that may be becoming more common. Provision for children in this situation has received little attention. We sought to estimate rates of severe paediatric acquired brain injury (ABI) requiring rehabilitation and to describe current provision of services for these children in the UK.

Methods This study conducted an analysis of Hospital Episode Statistics data between April 2003 and March 2012, supplemented by a UK provider survey completed in 2015. A probable severe ABI requiring rehabilitation (PSABIR) event was inferred from the co-occurrence of a medical condition likely to cause ABI (such as meningitis) and a prolonged inpatient stay (>=28 days).

Results During the period studied, 4508 children aged 1–18 years in England had PSABIRs. Trauma was the most common cause (30%) followed by brain tumours (19%) and anoxia (18.3%). An excess in older males was attributable to trauma. We estimate the incidence of PSABIR to be at least 2.93 (95%CI 2.62 to 3.26) per 100 000 young people (1–18 years) pa. The provider survey confirmed marked geographic variability in the organisation of services in the UK.

Conclusions There are at least 350 PSABIR events in children in the UK annually, a health problem of similar magnitude to that of cerebral palsy. Service provision for this population varies widely around the UK, in contrast with the nationally coordinated approach to paediatric intensive care and major trauma provision.

  • Health services research
  • Neurodisability
  • Rehabilitation
  • Outcomes research
  • Intensive Care
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  • Contributors RF conceived the study, secured funding and wrote the first draft of the paper. LH analysed the HES data and contributed to the article. SS oversaw the Provider Survey and contributed to the article. MP supervised HES data analysis and contributed to the article. RF is guarantor of the article. All authors read and approved the final manuscript.

  • Competing interests None declared.

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

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