IPBIS Conference Report :  The First International Conference on Paediatric Acquired Brain Injury

Jointly presented by the International Paediatric Brain Injury Society (IPBIS) and the International Brain Injury Association (IBIA)

16 – 18 September 2015, Liverpool, UK

Authors: Louise Blakeborough, Chapter Five,

Beth Wicks, Beth Wicks Consultancy,

Ron Savage, Sarah Jane Brain Foundation

The International Paediatric Brain Injury Society held its first International event last month in Liverpool, UK. ‘The First International Conference on Paediatric Brain Injury’ was a huge success with registration closing several weeks before the conference started due to overwhelming demand.

In her welcome to over 400 delegates Carol Hawley, IPBIS Chair said: “This is the first global event that brings together all those professionals involved in the identification, treatment and prevention of Acquired Brain Injury in children, adolescents and young adults. We have delegates from more than 35 countries here and on behalf of the IPBIS, I’m delighted to welcome you all”.

The theme of the conference was ‘Supporting Young People and Their Families to Maximise Good Outcomes and Quality of Life’. The conference programme explored issues relating to Acquired Brain Injury (ABI), both traumatic (e.g. external physical force injuries, penetrating injuries, etc.) and non-traumatic (e.g. infectious diseases, tumours, stroke, neurotoxic poisonings). Over two days delegates heard from a wide range of professionals about current and innovative treatments, rehabilitation programmes, support mechanisms, and ways to improve the lives and potential of young people with ABI and their families.

There were two pre-conference sessions: the first session examined the issues surrounding the diagnosis, management and long-term effects of concussion and was chaired by Audrey McKinlay from Australia and Michael Collins from the USA. The chairs presented information relating to concussion in younger children and then in teens and they were then joined for a panel discussion by Vicki Anderson, Barry Willer, John Leddy and Mark Lovell, all with acknowledged expertise in this field. The second pre-conference session focused on family resilience after ABI, chaired by Roberta DePompei from the USA and Lucia Braga from Brazil. This began with an interview format with Dr DePompei introducing the ‘real experts’: two sets of parents and one young man, all affected personally by ABI. These individuals provided frank and moving accounts of their journeys since this time but, as was the case throughout this session, with a focus on solutions and positive outcomes. Other professionals who then presented were Caron Gan, Jenny Jim and Ann Glang who discussed the role of families in achieving better outcomes, and the plethora of excellent tools that have been developed to support families in this role, albeit being used in very few countries.

The initial keynote speaker was Bryan Kolb from Canada, who has long been considered one of the world’s most influential neuroscientists, and he discussed the power of brain plasticity for treating children and youth with brain injury. Dr Kolb has been described as a ‘founding father of behavioural neuroscience’ and combines neuroscience and psychology to examine the important interplay between experiences, neurone changes and behaviour. His research focuses on how neurons in the cerebral cortex change in response to experiences, drugs, hormones and injury, and how these changes influence behaviour. Striking a chord that resonated throughout the conference, Dr Kolb emphasised that, although the brain remains ‘plastic’ throughout life, trajectories are set during the pre-natal period and early childhood. Brain development is very rapid in the womb and continues at an accelerated rate, particularly in the first two to three years of life. Any trauma at this developmental stage, including brain injury, will have a profound impact, resulting in many health and behavioural disorders relating to key areas of brain development normally associated with this period. Recognising that early intervention can make a huge difference on the developmental trajectories for children with ABI is an extremely important message for all professionals involved in brain injury care.

The following two days of the main conference included over 100 presentations selected from submitted abstracts and five panel sessions regarding specific themes. Delegates could choose to attend presentations from one of three tracks. There were also almost 90 poster exhibits, with the prize for the best poster being awarded to Katie Mah from Canada.

The following represents just a small selection of the many topics covered within a varied and high quality programme.

One of the frequently discussed topics at the conference was the increasing awareness of the effect of contact sports and brain injury. In one of the top scoring abstract presentations, Danielle Brewer from Canada and her colleagues examined the effects of long-term contact sport participation, as well as an acute season of varsity football, on cognitive function. Their findings suggested that cumulative exposure to football or other contact sports can influence long-term cognitive function. The collaborators expressed the hope that the results will add to the increasing pressure on sports’ governance councils to promote participation rules and safe play guidelines for young people.

The need for using validated outcome measures in paediatric ABI was also the subject of several presentations. Carol Gan from Canada and colleagues have developed a validated measure to assess family needs after paediatric ABI. The resulting Family Needs Questionnaire (FNQ-Paediatric), adapted from the FNQ adult ABI version, is now used for the systematic assessment of family needs for service planning and outcome measurement, long-term monitoring of family needs for programme planning and has multicentre usage in clinical paediatric ABI research.

Reference to the recent surge in the application of technologies as recovery or rehabilitation ‘aids’ highlighted the range available, but also the need for trials to provide the evidence-base for their usage. Anna Adlam from the UK and colleagues examined the acceptability and feasibility of web-based working memory training (Cogmed) in 26 children with ABI. Their findings showed that Cogmed was acceptable and accessible but suggested that the time period may need to be longer than the standard five-week protocol to complete treatment satisfactorily. A randomised controlled trial by Natalie Phillips and colleagues from Australia, another top scoring abstract presentation, provided evidence that Cogmed is associated with significant gains in one aspect of working memory in children with TBI.

Mark Linden from the UK presented a systematic review of technology-based interventions for the rehabilitation of memory and executive functions in children and adolescents following brain injury. He highlighted the problem that few studies have rigorously tested the effectiveness of these interventions in children and adolescents. Dr Linden’s review concluded that technology-based interventions have the potential to offer rehabilitation in the clinical, home and educational settings and are economical and readily available. However he proposed that greater co-operation between researchers and clinicians could increase sample sizes and lead to the development of more robust efficacy focused studies.

Work together across all disciplines involved in paediatric brain injury is a key requirement in all aspects of ABI care and meeting the information needs of children and young people is no exception. Lorna Wales from the UK and colleagues found that when young people were asked about their information needs they wanted different amounts of information at different times depending on their age and where they are on their own journey. They also wanted information delivered in a range of ways, including books, apps, board games and videos so they could hear others’ experiences of brain injury and how they coped with everyday challenges. Many information tools are available and need

Several panel sessions took place during the conference. A session on creating quality frameworks for programmes serving children and youth with ABI was introduced by Christine MacDonell, a director at CARF International (Commission on Accreditation of Rehabilitation Facilities) from the USA. Her overview highlighted the issues: “There is a disconnect regarding funding which is global, as is a lack of continuum of services. There is a lack of school integration, coordination and management, long-term monitoring, strategic direction and a shortage of human resources. There is also a lack of recognition that rehabilitation is a speciality and vital for managing the long-term consequences of disability following brain injury. Governments do not understand what we do and we need to share evidence and results to prove the outcomes of our work”. The panelists from Mexico, New Zealand, Saudi Arabia, Holland, Ireland and the UK all presented a management picture from their countries which substantiated much of Dr MacDonell’s comments.

The issue of school reintegration was a common theme. Sharon Grandinette from the USA discussed the increasing number of paediatric patients surviving the diagnosis and treatment of brain tumours. Many of these children return to school with an alteration in their physical, cognitive and social-emotional functioning which requires school intervention or services. Physicians and clinicians in hospital and rehabilitation settings can play a key role in communicating the medical and functional needs of these children as they transition to an educational setting. Clear communication between medical and school personnel is vital in improving educational, social, and vocational outcomes for these students.

Early life brain injury management requires a life span approach to treatment planning. The concept of youth transition management from children and adolescent services to adult services also requires careful consideration in the development of service initiatives and in developing new service structure research questions. Good practice areas and professional training needs are being identified in areas of youth transition management. A panel session chaired by Vicki Anderson from Australia and Katie Byard from the UK reviewed the social problems after childhood ABI. Dr Byard said: “Often the return to school is a mark of normality for families, but for the child it is just the beginning of social problems surrounding integration into school and friendship groups”.

The conference concluded with reviews by Vicki Anderson from Australia of the evidence of digital health and e-health technology and by Shari Wade from the USA, presenting an integrative, interdisciplinary roadmap for the evidence-based diagnosis and treatment of paediatric brain injury. IPBIS plan further to explore the ‘interdisciplinary roadmap’ concept within a session planned during the forthcoming IBIA Eleventh World Congress on Brain Injury in the Netherlands in March 2016.

Global Recommendations

IPBIS is developing global recommendations for the best practice management of children and young people with Acquired Brain Injury (ABI) and their families. The IPBIS board also intends to provide a statement to the World Health Organisation about the needs of children and young people with ABI. They are pleased to be working with the Eden Dora Trust to complete this project.

The input of all delegates to the conference towards this project was requested in order to obtain information regarding issues of importance and about work and research being undertaken across the globe. There was an impressive response to this request with a wealth of information being provided. This has now been analysed with some being used within the recommendations document and some being retained, hopefully, towards future more comprehensive guidelines.

IPBIS will continue to welcome further input which can be submitted to info@ipbis.org.

1st Dr Jane Gillett Award

During the conference, the 1st Jane Gillett Award was presented to Shari Wade, Director of Research in the Department of Pediatric Rehabilitation, Cinncinatti Children’s Hospital, USA. Dr Wade was presented with the award by Carol Hawley (IPBIS Chair) and Bernard Gluckstein (Gluckstein Personal Injury Lawyers) and said: “I’m very honoured to receive this award. I’ve had tremendous support throughout my life including my family and mentors. Thank you to all my staff that go the extra mile as we’re all passionate about our work”.

The award honours the memory of an outstanding physician, Dr Jane Gillett, who was a paediatric and adult neurologist at the forefront of brain injury treatment. She was the medical director of the Acquired Brain Injury Programme at Hamilton Health Sciences in Hamilton, Canada and an Associate Professor at McMaster University.

Dr Gillett was a founder of the IPBIS and its Board of Directors, in cooperation with Gluckstein Personal Injury Lawyers, created the Dr Jane Gillett Award. This first $1,000.00 USD award was accompanied by an original, framed work of art that was created by one of Dr Gillett’s former patients and artist, Benjamin Sloetjes. The award will be presented bienially.

Dr Gillett was known as a caring physician who worked closely together with patients, families, teachers, and other caregivers. She was one of the first to recognise that the impact of an acquired brain injury in youngsters may continue to emerge for many years post injury, often arising or changing with developmental stages. Dr Gillett established the Paediatric Acquired Brain Injury Community Outreach Program (PABICOP) in London, Ontario which continues today as an international model for children and youth with acquired brain injury and their families.

Lifetime Contribution Award for Ron Savage

Ron Savage was presented with the IPBIS Lifetime Contribution Award for his work in paediatric brain injury by the IPBIS Board of Directors.

Commenting on his award Dr Savage said: “Thank you – I’m delighted to receive this unexpected honour. During my career I’ve witnessed a great deal of progress in paediatric brain injury, most notably the evidence-base that now supports the fact that children with brain injuries grow to become adults with brain injuries. But many countries still lack the medical resources and long term supports for these young people. Even for those countries with good healthcare resources, there is often a lack of coordinated care between medical facilities, schools, communities and families. We must continue to work together to facilitate best practice implementation at all levels and in all countries”.

A second international paediatric brain injury conference is now being planned for the Fall of 2017.