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A team of Australia’s leading health researchers has developed a new ‘dictionary’ to better predict outcomes for people who have experienced a moderate-severe traumatic brain injury (TBI).
The Australian Traumatic Brain Injury Initiative (AUS-TBI) is a consortium of academics, researchers and healthcare professionals from institutions across the country.
Working together to understand the factors which could be used to predict outcome following TBI in a study supported by the Australian Medical Research Future Fund Mission for TBI, the team examined factors related to social support, health, clinical care, biological markers, acute interventions, and longer-term outcomes.
Published across eight articles in a special edition of the Journal of Neurotrauma, this work culminated in a Single Data Dictionary: a master list of information that if collected would give the best chance at understanding how a person will recover from their brain injury.
Consortium lead and Curtin University Deputy Vice-Chancellor, Research Professor Melinda Fitzgerald said predicting each individual’s outcome following a TBI was critical — but also very difficult.
“The rate and degree of recovery after moderate-severe TBI varies greatly, due in part to the complex and diverse nature of these injuries,” Professor Fitzgerald said.
“Despite decades of empirical research, prediction of outcomes after TBI for individual patients remains imprecise: we have only partial understanding of what it is about the person, their injury, their environment, or their care that moderates and/or determines the multiple outcomes that contribute to their quality of life.
“At present, there is no indicator or group of indicators that can sufficiently predict treatment outcome or responsiveness to allow for personalised acute care and rehabilitation for patients with TBI.”
To create the Single Data Dictionary, the AUS-TBI team examined thousands of published research articles reporting factors which may impact a person’s recovery, such as their medical history, social contexts, biological markers, level of personal support, effectiveness of treatment and more.
The team also consulted extensively with people who have lived experience of TBIs, including an Aboriginal and Torres Strait Islander Advisory Group, to develop the Single Data Dictionary of predictive markers alongside guidelines on how to collect them in a coordinated, culturally sensitive national approach.
Co-author Dr Sarah Hellewell, from Curtin’s Faculty of Health Sciences, Curtin Health Innovation Research Institute and the Perron Institute, said providing personalised care to ensure the best outcomes for patients was critical, as TBIs are often catastrophic and have lifelong impact on patients, their families, workplaces, the criminal justice system and society as a whole.
“Severe TBI has a mortality rate of 30-40 per cent, less than 50 per cent of patients achieve long-term independence and new injuries add $2 billion in lifetime direct costs to the Australian healthcare system each year,” Dr Hellewell said.
“Between 2006 and 2015, there was no change in survival or functional outcomes following TBI, proving the need for better, targeted management strategies to reduce mortality and improve quality of life for these individuals and reduce negative impacts on families and society.”
Organisations also involved in the consortium include the Perron Institute, Telethon Kids Institute, Monash University, Griffith University, Deakin University, University of Sydney, University of Queensland, University of Adelaide, University of Melbourne, University of Newcastle, Synapse, Hunter Medical Research Institute, John Hunter Hospital, Brightwater Care Group, The Children’s Hospital at Westmead and Epworth HealthCare.