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.
Keywords: Health services research; Intensive Care; Neurodisability; Outcomes research; Rehabilitation.
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