PAEDIATRIC ACQUIRED BRAIN INJURY A GLOBAL CHALLENGE

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January, 2016 "Produced by the International Paediatric Brain Injury Society in collaboration with The Eden Dora Trust"

INTRODUCTION

This report is produced by the International Paediatric Brain Injury Society (IPBIS), in collaboration with The Eden Dora Trust, to gain global recognition of Acquired Brain Injury (ABI) in children, adolescents and young adults, to highlight the challenges faced by individuals with brain injury, their families and the professionals responsible for supporting them, and to outline recommendations to steer a way forwards to maximise outcomes.

Acquired Brain Injury (ABI) is any injury to the brain which has occurred following birth (Teasdale 2007). It includes Traumatic Brain Injuries (TBIs) such as those caused by trauma (e.g. a blow to the head from a road traffic accident, fall or assault), and non-TBIs related to illness or medical conditions (e.g. encephalitis, meningitis, stroke, substance abuse, brain tumour and hypoxia). The resultant damage to the brain can cause physical, cognitive, academic and psychosocial effects which may be temporary or permanent. ABI commonly leads to neurocognitive deficits which interfere with executive function, skill acquisition, adaptive deficits and academic failure (Anderson et al 2009, Jaffe et al 1993). The psychological issues arising from an ABI can affect interpersonal relationships and contribute to poor community, social and vocational integration, as well being a personal and economic burden for the family and community (Benz et al 1999, McKinlay et al 2002).

There is a paucity of information about ABI due to inconsistencies in definition and classification, data collection discrepancies and inadequate reporting. Consequently the figures for ABI, if available, present an underestimate of the global situation. Many of the children, adolescents and young adults with ABI will have life-long disabilities, so an accurate understanding of the numbers affected is vital for the planning of coordinated care and long-term management.

Incidence data for non-TBIs relates to the illness or medical condition; the long-term disability from any resultant brain injury is rarely documented. Most available data documents the incidence of TBI. Worldwide, TBI is the main cause of death and disability in children (Sergui-Gomez and MacKenzie 2003). The burden of TBI is prominent in low and middle income countries where there is a higher preponderance of risk factors for the causes of TBI, and inadequately prepared health systems to address the associated health outcomes.

There is a general lack of understanding of the effects of ABI in children, adolescents and young adults, and a lack of awareness that, over time, problems occur post-injury. The needs of these individuals will differ substantially depending on the nature and severity of the brain injury and its outcomes. Current care programmes and service provision for ABI are often non-existent or inadequate. There is a limited availability of guidelines that focus on children, adolescents and young adults with ABI. Some guidelines are available on a national and local level, but they tend to focus on the acute phase of care and do not include post-discharge, long-term rehabilitation, the academic implications, transition and life-long management or encompass the crucial role of families.

The challenges presented by ABI need to be addressed. The detrimental impact of ABI will continue to increase and society is largely unaware of the magnitude of this ‘silent epidemic’. The burden of mortality and morbidity that this chronic condition imposes on society worldwide makes ABI a pressing public health and medical problem that has significant, long-term, global economic consequences.
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  • Recommendation Endorsements by:

    WFNR (World Federation for NeuroRehabilitation) http://wfnr.co.uk/

    IBIA (International Brain Injury Association) http://www.internationalbrain.org/

    INPA (Independent Neurorehabilitation Providers Alliance) https://www.in-pa.org.uk/

    Encephalitis Society https://www.encephalitis.info/

    BISWG (Brain Injury Social Work Group) http://www.biswg.co.uk/

    BPS (British Psychological Society), Division of Neuropsychology https://www.bps.org.uk/topics/neuropsychology

    UKABIF (United Kingdom Acquired Brain Injury Forum) https://www.ukabif.org.uk/

    Headway: the brain Injury association https://www.headway.org.uk/

    Brake (road safety charity) http://www.brake.org.uk/

    Child Brain Injury Trust https://childbraininjurytrust.org.uk/

    NABIS (North American Brain Injury Society) http://www.nabis.org/

    United States Brain Injury Alliance (USBIA) http://usbia.org/

    US Paediatric Brain Injury Collaborative

    Dutch Society of Paediatric Neurology https://www.nvkn.nl/home

    Dutch Association of Psychologists, section of Neuropsychology http://neuropsychologienederland.nl/english

    Dutch Association of Psychologists, section of Rehabilitation https://www.psynip.nl/en/

    Dutch Centre of Expertise on Special Education/ Association of special schools

    Dutch National Steering Group for Youth with Brain Injury

    Netherlands Society of Rehabilitation Medicine (VRA) https://revalidatiegeneeskunde.nl/

    Swedish Neuropsychological Society https://snpf.se/

    Swedish organization for people with acquired brain injury – Hjärnskadeförbundet Hjärnkraft http://www.hjarnkraft.nu/sv/english

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