By Louise Blakeborough, MSc
In her welcome to the over 400 delegates from around the world, Dr. 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 the 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 Dr. Audrey McKinlay (Australia) and Dr. Michael Collins (USA). The second pre-conference session focused on family resilience after ABI, chaired by Professor Roberta DePompei (USA) and Dr Lucia Braga (Brazil). They 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 used in very few countries.
Keynote speaker, Dr Bryan Kolb (Canada) who has long been considered one of the world’s most influential neuroscientists, 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 cord 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 in the first two to three years in particular. Any trauma at this developmental stage, including brain injury, will have a profound impact, resulting in many health and behavioural disorders related to how the brain had developed in 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.
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 abstracts, Danielle Brewer (Canada) and 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 and contact-sport influences long-term cognitive function. The collaborators expressed the hope that the results will add to the increasing pressure on sports governance councils to guide participation and safe play guidelines for young people.
The need for using validated outcome measures in paediatric ABI was also the subject of several presentations. Caron Gan (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.
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 (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 (Australia) and colleagues, another top scoring abstract, provided evidence that Cogmed is associated with significant gains in one aspect of working memory in children with TBI. Dr. Mark Linden (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 cooperation 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/young people is no exception. Lorna Wales (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 to be ‘shared’ globally to avoid duplication of effort and maximise resources.
Inagural Dr Jane Gillett Award
The Inaugual presentation of the Jane Gillett Award was made to Dr. Shari Wade, Director of Research in the Department of Pediatric Rehabilitation, Cinncinatti Children’s Hospital, USA. Dr. Wade was presented with the Award by Dr. Carol Hawley (IPBIS Chair) and Bernard Gluckstein (Gluckstein Personal Injury Lawyers). Commented Dr. Wade: “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 doctor, 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 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 in London, Ontario which continues today as an international model for children and youth with acquired brain injury and their families.
Dr. Gillett was also one of the founders of the IPBIS and served on its first Board of Directors. Thanks to the generous support of Gluckstein Personal Injury Lawyers, IPBIS has been able to create this award in her memory. The $1,000.00 USD Award also includes an original, framed work of art that was created by Dr. Gillett’s former patient and artist Benjamin Sloetjes.
Lifetime Contribution Award for Dr Ron Savage
Dr. Ronald Savage was presented with the IPBIS Lifetime Contribution Award for his many contributions to the field of paediatric brain injury during his long career.
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”.
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 Dr. Christine MacDonell (USA). During her overview highlighting the issues she noted: “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 specialty 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 in their countries which substantiated much of Dr. MacDonell’s comments.
The issue of school reintegration was a common theme. Sharon Grandinette (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 area of youth transition management. A panel session chaired by Professor Vicki Anderson (Australia) and Dr. Katie Byard (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 two plenary sessions featuring a review by Dr. Vicki Anderson (Australia) of the evidence of digital health and e-health technology, and Dr. Shari Wade (USA) presenting an integrative, interdisciplinary roadmap for the evidence-base diagnosis and treatment of paediatric brain injury.
A second international paediatric brain injury conference is now being planned for Fall 2017. Please visit this website for details as they become available.
On behalf of the IPBIS, Drs. Carol Hawley, Ronald Savage and Beth Wicks would like to thank the speakers, the organisations who provided general support, the many exhibitors and all the delegates who attended and interacted to make this First Conference on Paediatric Brain Injury so memorable.
To view the on-site pdf programme fror the conference, click here.
To view the text of the accepted abstracts, click here.