The ask is simple and straightforward: Classify traumatic brain injury (TBI) as a chronic condition.
But behind the request for a new designation lies an important call to action: Canada needs to dramatically improve its approach to TBI, an often-debilitating condition, by addressing a host of issues ranging from data collection to rehabilitation.
“The emotional, physical, and financial strain of TBI are all-encompassing, spanning direct health care costs, lost productivity, and intensive, daily stress for individuals and their families,” says Michelle McDonald, CEO of Brain Injury Canada. “An official recognition of TBI as a chronic condition could mean a world of difference in ensuring that continuous care, support, and rehabilitation services for TBI patients are available nationwide.”
Brain Injury Canada and the Canadian Traumatic Brain Injury Research Consortium have joined forces to produce a short, impactful report on the issue, hoping to get the attention of policy-makers. And it’s an issue that affects many people. An estimated 165,000 Canadians suffer moderate to severe traumatic brain injuries each year. That’s one person hurt, often permanently, every three minutes. (That number does not include concussions, a milder form of TBI.) About 4,000 deaths and 30,000 hospitalizations a year in Canada are attributed to TBIs.
While there are often no visible signs of brain injury, patients can suffer dramatic physical, emotional, behavioural and cognitive changes. Symptoms can include constant headaches, confusion, problems communicating, loss of mobility and a need for assistance with daily activities such as bathing, feeding and toileting. TBI also sharply increases suicide risk, and there is growing evidence that traumatic brain injury can increase the risk of conditions such as dementia and Parkinson’s.
Ryan Straschnitzki, a hockey player badly injured in the 2018 Humboldt Broncos bus crash, says living with a traumatic brain injury is a huge adjustment, “like being in a foreign country where you don’t understand the language, the culture or the customs.” He also suffered a spinal cord injury; TBI and SCI often happen together, especially in motor-vehicle crashes, but serious brain injuries are about 100 times more common than spinal cord injuries.
Though the too-common long-term suffering is poorly tracked, there are a handful of underlying causes to blame. Falls account for more than half of TBI cases, as many older people, and even healthy young adults, bang their heads and are seriously hurt in seemingly insignificant incidents. Motor-vehicles crashes affect people of all ages, including a large number of younger people, as do sports injuries, mostly in contact sports, which don’t just happen to professional athletes. Intimate partner violence and other forms of assault are an often-overlooked cause of TBI; recent research shows that about 60 per cent of women who have suffered such violence have experienced traumatic brain injury. Work-related injuries, which includes military combat, also contribute to the numbers.
“The injury never goes away, and you are never the same person you were,” Barb Butler, a TBI advocate who suffered a severe brain injury in a 1993 car crash, says in the Brain Injury Canada report. She notes that there is a lot of emphasis on acute care after the initial injury but little support over the long term.
Indeed, while Mr. Straschnitzki’s case was highly publicized and he received first-rate care, it can often be difficult to get rehabilitation services in Canada, though that varies significantly depending on where you live. The health and welfare systems are also poorly integrated, and people with traumatic brain injuries struggle to access job training, disability services, and long-term care. And that is needed, because the employment rate is only 13 per cent among TBI sufferers – a dramatic difference from the 75 per cent preinjury rate. As a result, brain damage can be a fast-track to poverty and homelessness.
In fact, more than half of people living with homelessness have a history of traumatic brain injury, and the rate of brain injury in prisoners is 2.5 times that in the general public. TBI also disproportionately affects Indigenous people, as they are far more common in rural and remote areas.
Classifying traumatic brain injury as a chronic condition won’t magically resolve those many issues. But it would allow for standardized data gathering and tracking of patients. “Brain injury is not an event or an outcome. It is the start of a misdiagnosed, misunderstood, underfunded neurological disease,” says Dr. Carolyn Lemsky, clinical director of Community Head Injury Resource Services of Toronto.
Addressing the data gaps could, in turn, shine a light on the gaps in care and funding – and hopefully lead to tackling the troubling disparities in care.
André Picard