While professional contact sports have garnered most attention, when it comes to concussion, researchers are keen to learn of the experiences of the 80% who are injured in the course of their daily lives.
By Eric Martin
A team of Australian researchers, involving Curtin University, Edith Cowan University, the University of Notre Dame, and The Kids Institute, have pioneered a new ‘dictionary’ to better predict outcomes for people who have experienced a moderate-severe traumatic brain injury (TBI).
The work of the Australian Traumatic Brain Injury Initiative (AUS-TBI) is supported by the Australian Medical Research Future Fund Mission and examined factors related to social support, health, clinical care, biological markers, acute interventions and long-term outcomes.
Published in the Journal of Neurotrauma (April 2024) as a series of eight articles, the dictionary was informed by a ‘TBI lived experience expert group’ and AUS-TBI Aboriginal and Torres Strait Islander Advisory Group, which helped to shape a culturally unique approach to management of the condition.
The group also partnered with the developers of the Headcheck app, which for almost a decade has been helping Australians recognise the symptoms of concussion and manage their recovery.
Using the app, study participants can track and manage their symptoms over a 12-month period or until their symptoms resolve, while gaining access to information and resources to help their recovery and return to normal daily activities such as study, work, sports or recreation.
Counting cost
Curtin’s Deputy Vice Chancellor Research, Professor Melinda Fitzgerald, has been the lead for both studies. She explained that nationally, 790 TBI cases per 100,000 people annually have been reported, equating to 190,000 to 200,000 cases a year, of which about 20,000 are moderate to severe injuries.
New injuries add $2 billion in lifetime direct costs to the healthcare system annually, with significantly high, ongoing costs faced by some patients. Severe TBI has a mortality rate of 30–40%, and less than 50% of patients achieve long-term independence.
“Despite decades of empirical research, prediction of individual outcomes after TBI 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 quality of life,” Professor Fitzgerald said.
“At present, there is no indicator that can sufficiently predict treatment outcome or responsiveness to allow for personalised acute care and rehabilitation for individual patients with TBI. There is an urgent need to standardise approaches to data capture and harmonise measures when assessing interventions and outcomes across sites and contexts.”
She pointed out that the challenge for clinicians was that in a small proportion of people, the symptoms could continue for multiple weeks, “if not months or even years.”
“We don’t understand what it is about a person and their injury that predicts whether they will recover normally, or if their symptoms will continue. This app is a novel approach to online health data collection and interpretation, and we hope it will help us to understand the experience of more than 5000 people who have had a recent concussion.”
Professor Fitzgerald noted that despite the prominent coverage of sports stars being impacted by TBI, only about 20% of concussions and more severe injuries occur because of accidents on the sporting field.
“There is a considerable proportion of people who experience concussion just in their normal daily activities, such as through motor vehicle accidents, the elderly having falls, and kids having accidents in the playground,” she said.
“Our project is trying to figure out what it is about the person and their injury and their pre-existing health conditions that might indicate whether they are going to recover normally within the first few weeks after injury, or whether they are going to have those persisting symptoms.
“And a key factor is how many other injuries they might have received in the past such as pre-existing health conditions, whether they suffer from headaches or migraines in the normal course of their life, whether they have any other mental health conditions, and whether this is their first concussion. Critically, it captures the context of how they experienced their concussion.”
In an international first, that information will be analysed via machine learning to determine the most crucial factors for predicting the outcome for an individual and their injury.
Big data
“Previous studies of this nature have confined their attention to some of the basics, such as sex, age, what caused the injury, whether there was any accompanying injury to the skull, and whether the person lost consciousness,” she said.
“Whereas this project is going to be much wider ranging, and because it is such a large suite of data measures and outcomes, we do need the power of machine learning to be able to ascertain the most predictive variable.
“The second phase of the project next year is a refinement of the app to focus on those predictive elements to improve how people are managed following a concussion injury – informing guidance about graded returns to activity or whether they should seek specific medical care based on their symptoms.
“At this stage, we have only been going for a few weeks and the study has enrolled 50 participants, but we are looking for 100 times that – 5,000 people. The studies to date have been limited to hospitals because it is much easier to collect information within that context.
Subject search
“But that is a fraction of people who experience concussion and up to 50% of people do not even seek medical care. As such, we are getting out in the community so that we capture the breadth of people who suffer these injurie.
“It is extremely exciting and as scientists, we are extremely curious about how the data will pan out.
“Anyone who has experienced a concussion in the past two weeks is encouraged to download the Headcheck app and log in to the AUS-mMTBI study and contribute to that research as well.
“The benefit to the individual is that they will be able to map their symptoms, including a graph of how they evolved over time which they can take back to their GP or other healthcare provider. Diagnostically, that is a real value addition for people who get involved with these studies.”
Professor Fitzgerald said that if people have had a migraine in the past, they had a greater propensity to experience longer-term, continuing symptoms after a concussion or a more severe traumatic brain injury, noting that natural resilience was also a protective factor.
“People who score higher on resilience scales tend to do a little better following a concussion. So, it is a bit about mindset and whether you are the sort of person that tends to bounce back from adversity,” she said.
“But it is not black and white, though if you are looking at factors that give an indication of susceptibility, then that is an interesting discovery. Similarly, there are particular areas or types of lesions in the brain where more severe injuries can be predictive of worse outcomes, which is valuable because most patients do not have a visible injury on a standard CT scan or CAT scan.
“With more advanced imaging using MRI, there are certain imaging features that might be more predictive and could add more detail or information.
“And that is one of the most exciting things about the AUS-mTBI study, we are conducting a sub-study to collate these types of images of people’s brains, combining that data with blood biomarkers, as well as all the data we are collecting through the app, to build a comprehensive database of markers.
“If we find that there is a particular type of imaging or a particular blood biomarker that is genuinely predictive, it provides a sound justification for introducing this data into standard clinical care.”
Professor Fitzgerald said that her team had been working with the AFL on the new modifications to the Headcheck app, making sure that the code’s practices were in line with the most recent guidelines and advice that have been released by the clinical working groups.
Widening focus
“While players in some of the heavy contact sports like AFL and rugby are expected to experience concussions during play, it was a range of individual sports, such as equestrian, bike riding and gymnastics, where there was also
a high incidence of concussions,” she said.
“Care needs to be taken and the return to activity protocols followed carefully in these sports or activities in which an injury to the head can occur. Similarly, in a workplace context, there are specific occupations where people can be exposed to falls from height and similar hazards which make a concussion more likely to occur.”
As the founding CEO of the charitable organisation, Connectivity Traumatic Brain Injury Australia, Professor Fitzgerald said that one of the biggest challenges such groups faced was getting the latest evidence-based care information into the hands of GPs and first responders in community settings.
“It is about implementing the research, and that needs to be occurring hand-in-glove with the scientific process so we can ensure that GPs and other healthcare professionals have the resources that they need to be able to make good clinical decisions regarding the management of their patients’ concussions.
“The RACGP has been highly supportive and disseminated information about our online education courses. There has been good buy-in so far, but it will take even more resources to reach a wider audience and get the best evidence-based knowledge into the community,” she said.
“We need to get the word out there that, in fact, the fall you had when you tripped and banged your head on the ground, was actually a concussion. And while you are probably going to recover reasonably well, the chances of a good recovery are much better if you are professionally managed and take a graded return to activity by following the appropriate guidelines for recovery.
“Similarly, elderly people are much more likely to suffer concussion and to have more ongoing symptoms if they are on blood thinning medications, are at risk of stroke, or have heart arrhythmias.
“By being able to gather information about what the real range of pre-existing health conditions are, we will be able to document the elevation of risk within these groups.
“We hope GPs will encourage their patients to download the Headcheck app and join the AUS-mTBI study – the knowledge we gain will not only guide that person to an improved recovery but develop better recovery pathways for people in the future.”