CONFERENCE REPORT: Third International Conference on Paediatric Acquired Brain Injury, 26-28 September 2018, Belfast, Northern Ireland

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Belfast, Northern Ireland, 26-28 September, 2018- "by Louise Blakeborough MSc"

CONFERENCE REPORT: Third International Conference on Paediatric Acquired Brain Injury, 26-28 September 2018, Belfast, Northern Ireland

Riddel Hall in Belfast, Northern Ireland, was the setting for this year’s Third International Conference on Acquired Brain Injury (ABI). With the theme ‘promoting well-being in children and young people with ABI and their families’, the conference was attended by over 270 physicians, allied health professionals, educators, social workers and legal professionals from many countries worldwide.

After an introduction from Mark Linden, Conference Chair, Professor Ian Greer, President and Vice-Chancellor of Queen’s University formally welcomed delegates to Belfast, ‘the birthplace of the Titanic, which famously struck an iceberg and sunk in 1912’.

IPBIS Conference Images Belfast 2018

The focus of the conference was the development of new assessment tools, innovative therapies and devices, rehabilitation programmes, teaching strategies, psychological and social support, increasing the potential for recovery in young people affected by brain injury and giving, at the same time, support to the families.

Individual, tailored rehabilitation programmes are key
Professor Jennie Ponsford, Director of the Monash-Epworth Rehabilitation Research Centre and Professor of Neuropsychology, Epworth HealthCare, Australia set the scene for the conference by discussing three case studies that illustrated the diverse range of short and long-term problems affecting children and young people after a brain injury.  Addressing the physical, cognitive and academic deficits is clearly important, but mental health is also a huge problem in these children longer term, together with fatigue and sleep problems. The influential impact of the environment and family on the child’s recovery should not be underestimated, as interventions implemented by the family have been shown to be significantly more advantageous than those provided by clinicians.

Professor Ponsford asked: “How can we promote well-being in children with brain injury and their families so as to optimise recovery?”.  Building self-advocacy in the child, parents and teachers is vitally important, as well as promoting friendships and Professor Ponsford stressed the need for long-term monitoring, as well as tailoring rehabilitation programmes to the individual child.

“There is a critical window for treatment and early access to rehabilitation is very important” said Dr Andreas Meyer-Heim, Chief Medical Officer of the Rehabilitation Centre Affoltern am Albis and Department of Rehabilitation at the University Children’s Hospital in Zurich, Switzerland.   Dr Meyer-Heim discussed the role of novel technologies for the rehabilitation of children particularly robot-assisted and computer-based rehabilitation, which allow the mapping of the principles of sensory-motor learning.  Automatisation provides an increase of repetitions that mirrors the dosage-dependency of rehabilitation measures, and the devices also provide the possibility of augmentable feedback as well as encouraging the patient’s motivation and active participation.

Dr Meyer-Heim described the use of robotics available for children ranging from the Lokomat, paediatric exoskeleton, robot-assisted gait and upper extremity therapy, to game-based robots e.g. Gabarello.  However, he also stressed the importance of tailoring the rehabilitation programme to the child, and ensuring that the development of these technologies focusses on the improvement of therapy functions that are relevant in daily living activities.  He concluded: “No one size fits all and no robot is a stand-alone therapy”.

The theme of tailored management was echoed by the third keynote speaker, Dr Gerard Gioia, Division Chief of Pediatric Neuropsychology at Children’s National Health System, Washington, USA who looked at active rehabilitation of paediatric concussion.  To date the treatment of concussion in children has primarily focussed on ‘rest’.  Although there are well demonstrated benefits to lowered activity during concussion recovery, there are conditions where underactivity can be negative for physical and psychological health and does not aid a quick recovery.  Dr Gioia discussed moving from rest to a more active rehabilitation approach: “Concussion manifests itself diversely, particularly in terms of the recovery trajectory, but we need to understand the individual and treat them accordingly”.

He described the Progressive Activities of Controlled Exertion (PACE) model that assists the child’s individualised recovery in returning to school, social life and physical/ recreational activity.  PACE is based on the principle of ‘not too little, not too much’, where the child is taught to begin with a low level of activity, monitor it and move forwards to a level which will facilitate return to school and re-entry to sport activities.  Educating and involving the patient and their family is an important part of recovery management.  “We’re in an imperfect world in understanding this injury but we are moving forwards” said Dr Gioia.

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Long-term care and follow-up is essential   
ABI has life-long consequences but long-term care and follow-up is frequently inadequate.   A retrospective study discussed by Mathilde Chevignard (France) looked at executive functioning in children, seven to eight years post-severe childhood TBI, which re-iterated the long-term consequences of ABI, and the need for long-term specific care and follow-up.  The study found cognitive and behavioural aspects of executive functioning were significantly impaired and the consequences were evident in everyday life, mostly related directly with injury severity and the evolution of intellectual ability.

In an evaluation of 152 young people seen in a UK community neuropsychological rehabilitation service, Suzanne Watson (UK) found that they had presented to the service several years after their brain injury.  The young people had a combination of difficulties across executive functioning, psychological health and well-being issues.  The delay in presenting at the clinic impacted on their quality of life, and potentially had lifelong implications for their health and social outcomes.     

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Wide range of family support and interventions available   
A variety of family supports and interventions were discussed throughout the conference.  ‘All about my brain’ comprises two short booklets from the UK’s Child Brain Injury Trust, to help children and young people better understand how their brains work, what happens when the brain is injured, and to provide strategies that could help them in their everyday lives.   

It is well documented that the peer relationships of children and adolescents are important for the development of social competence and confidence, and for mental health and well-being.  The ABI problems with disinhibition, impulsiveness, poor social judgement, lack of emotional response and slowed processing can all contribute to difficulties maintaining relationships with peers, as well as acquiring new ones.  Loneliness has been reported as one of the dominant concerns for children and young people living with a brain injury, despite the use of social media which can be both ‘a friend and a foe’.  The team at Kings College Hospital London, UK discussed their ‘Peer Events’ initiative that supports the child’s friendships throughout their inpatient rehabilitation.  An event is organised with a group of friends chosen by the child/young person with an ABI and all are invited to a half-day session at a nearby non-hospital facility.  The therapy team offers brain injury education appropriate to the age group, information about how they could help their friend, a forum for questions, sharing thoughts and feelings and a supported social activity.  Feedback from events that have taken place over an 18-month period has demonstrated a positive impact.

A new social participation and navigation (SPAN) website and web application was described and demonstrated by Gary Bedell (USA).  SPAN is targeted at adolescents and young adults with ABI, runs on multiple devices and usability testing is currently underway.   Michael Brogan (Ireland) discussed the use of a range of low to high-tech memory strategies for a 14-year-old with permanent short-term memory loss following ABI.  The low-tech strategies include check-lists, visual reminders, calendars and signs around her home and school to help support her memory.  The high-tech strategies include using mainstream specialist assistive technologies on her smart phone and iPad.  The evidence base for the use of these compensatory aids was also discussed.

Emily Talbot (UK) discussed the ‘Parents in Mind’ support group; a six-session support and information group for parents established to assist in the understanding of neuropsychological issues and to access additional peer support.  The group has been so successful it is now being rolled out across the country.
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Education interventions – evidence-base required
Students with mild to moderate ABI are increasingly released from hospital with no plans for their long-term rehabilitation.  Long-term rehabilitation pathways often rely on the availability of resources and multi-agency cooperation, and this has resulted in schools and the wider community becoming the primary service providers.

Nathan Hughes (UK) presented the results of two systematic reviews looking at existing community-based (12 studies), and school-based interventions (18 studies), that target children and adolescents following TBI to assist with this transition and beyond.   Although all the interventions claim to have a positive effect, the quality of evidence was found to be weak and highly variable.  Higher quality evidence is needed to ensure that the right intervention is being used, and schools and communities are empowered to maximise the young person’s best possible outcome.

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Facilitating change for neurorehabilitation services
The UK All Party Parliamentary Group on ABI recently produced a report entitled ‘Acquired Brain Injury and Neurorehabilitation: Time for Change’.  The report makes a number of crucial recommendations with regard to neurorehabilitation and the need for improved services in education, the criminal justice system, sport and also the welfare system to support individuals with ABI.  Implementing these recommendations will be a huge challenge and delegates were asked to share their thoughts, ideas and experiences in their own countries.

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Concussion news
Sport-related concussion in young people is a complex, emotive subject with a rapidly evolving knowledge base.  It is challenging to assess, particularly in terms of reliability, partly because of the cognitive and physical maturation that young people undergo during this time period.  Previous research has found strength deficits following a brain injury, however, little research to date has explored strength assessment as a potential tool in concussion management.  Tiffany Toong (Canada) presented a study that explored the test-retest reliability of upper and lower body strength measures in young athletes.  The study demonstrated the test-retest reliability of strength assessments in youth athletes 10-18 years across clinically relevant test-retest time intervals and in both sexes.

Athletes may experience high levels of anxiety during concussion assessment due to concerns about being removed from a sport due to injury, or the inability to perform their sport.  Tamerah Hunt (USA) presented preliminary data looking at whether this anxiety also affects cognitive efficiency during baseline concussion assessment, and found that it did not.  Repetitive head impacts during sport may result in changes in cognitive or functional imaging measures and much work has been studied in college or professional athletes with few studies in younger athletes.  Brenna McDonald (USA) examined a cohort of high school football players to assess whether cognitive or functional neuroimaging alterations could be detected after a single season of play.  High school football players did not show significant cognitive changes relative to non-contact controls over the course of one season, but did demonstrate reduced working memory-related brain activation post-season relative to pre-season, which may require further investigation.

Alina Fong (USA) described the role of functional NeuroCognitive Imaging (fNCI) in order to direct concussion treatment and therapy.  fNCI uses a standardised protocol of functional magnetic resonance imaging (fMRI) and adapted neuropsychological evaluations to effectively quantify neurovascular coupling (NVC) function within the brain.  Concussed patients (ages 7-18 years) were assessed with fNCI to establish pre-treatment NVC benchmarks, and the results were used to develop individualised, targeted and sustained cyclical week-long Enhanced Performance in Cognition (EPIC) therapy incorporating cognitive, occupational and neuromuscular modalities.   This innovative, individualised pattern of treatment was found to facilitate improved patient outcome and quality of life.

The SCHOOLFirst Return-To-School Resource is a user friendly, accessible and evidence-based resource developed to assist school personnel with supporting students to successfully return-to-school post-concussion.  Christine Provvidenza (Canada) presented a usability evaluation of the resource with school personnel.  The feedback was then used to optimise the resource and ensure it meets the users’ needs.  The use of infographics as a means of turning dense information into bite-sized pieces in these resources was also discussed as a positive development in information dissemination.

The Brains Ahead! intervention for children with mild TBI and their caregivers was discussed by Irene Renaud (Netherlands).  It is a combination of screening for mTBI symptoms, psychoeducation and follow-up, and is expected to prevent long-term post-concussion symptoms and problems in activities and participation.  It is currently being evaluated in a multicentre randomised controlled trial.

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Pre-conference courses overview
There were four pre-conference courses looking at paediatric psychopharmacology and innovative technologies used with children and adolescents following ABI, a global perspective on successful education following childhood TBI – problems and solutions, post-traumatic amnesia in children and novel approaches in the evaluation and treatment of children with disorders of consciousness.

Post-traumatic amnesia (PTA) has been found to be a better predictor of long-term cognitive and functional outcomes than other indicators of injury severity, including the Glasgow Coma Scale.  This pre-conference course examined current research and practices using established measures and those more recently being developed.  It highlighted the limited availability of assessment scales, however the children’s orientation and amnesia test (COAT) is a reliable and valid measure available in many languages.  There are factors that impact on PTA assessment including pain medication, and children may need to ‘weaned’ off medication before measuring PTA.  Commenting on the Sydney PTA Scale (SYPTAS), a new assessment scale currently being trialled, Associate Professor Suncica Lah  (Australia) said: “SYPTAS is a new scale that will set the stage for measuring PTA”.

Disorders of consciousness (DOC) in children and young people is a small but important field, and the pre-conference course focussed on the novel approaches in the evaluation and treatment of children with DOC.   A systematic review highlighted that there are only three clinical papers pertaining to children.  Attendees heard about some of the assessment measures available, the role of music to raise and maintain arousal, and a comprehensive overview of medical management.

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Dr Mathilde Chevignard - recipient of the 2018 Jane Gillett Award

Dr Mathilde Chevignard, a Physical Medicine and Rehabilitation physician at the Paris-based Saint Maurice Hospital, France, is the recipient of this year’s Jane Gillett Award.

The Award, presented by Gluckstein Personal Injury Lawyers, honours the memory of Jane Gillett, a paediatric and adult neurologist at the forefront of brain injury treatment, founder and then President of the IPBIS and one of the first to recognise that the impact of an ABI in young people may continue to emerge for many years post-injury.

In addition to Dr Chevignard’s outstanding clinical and research interests in a wide range of ABI including TBI, abusive head trauma, brain tumour, encephalitis and childhood stroke, she is also an active mentor to the next generation of doctors, neuropsychologists and allied health professionals involved in the care of children with ABI.

Commenting at the presentation ceremony, Dr Chevignard said: “I’m delighted and honoured to receive this Award”.

The $1,000.00 Award, presented by Bernie Gluckstein, also includes an original, framed work of art by a former patient of Dr Gillett.

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‘Toolbox’ launched: Guidance for the post-discharge rehabilitation of children, adolescents and young adults with acquired brain injury
This ‘toolbox’, instigated by the IPBIS, and produced together with The Eden Dora Trust for Children with Encephalitis, was launched at the conference.  It contains an overview of a wide range of tools and programmes for use by health professionals in the rehabilitation post-discharge from acute care following ABI.  The majority of the toolbox contents are free to use, with web addresses and/or contact details provided so that further information can be obtained.

Health professionals can access the toolbox at several websites:
https://ipbis.org/toolbox.html
http://www.edendoratrust.org/Toolbox
www.internationalbrain.org

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Poster winner
After three days of posters on a wide range of topics, selecting one winner was challenging.  The winner was Katia Colombo and colleagues (Italy) who presented a study looking at the long-term vocational outcome following severe TBI in children when compared with other brain lesions.

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