25 years of patient data has helped reshape approach to traumatic brain injury

Over the past 25 years, more than 1,400 patients from across Ohio have participated in a project that’s helped improve care for people with traumatic brain injuries, not just in rehabilitation facilities and doctor offices, but in substance use treatment centers, domestic violence shelters, prison systems and social service agencies.

Patients who’ve experienced a moderate or severe traumatic brain injury (TBI) share information with researchers studying the impact such trauma has over a lifetime. Since 1997, data has been collected from patients one, two and five years after their injuries, then every five years, through the Ohio Regional Traumatic Brain Injury Model System center, facilitated through the Department of Physical Medicine and Rehabilitation in The Ohio State University College of Medicine.

Discoveries have reshaped brain injury rehabilitation, informing patients and caregivers on everything from measuring agitation when a person wakes from coma, to the prevalence and treatment of post-injury substance use disorders, to identifying important factors that can optimize community participation.

They offer promise to patients and loved ones affected by these invisible injuries, including the roughly one in four adults who has experienced at least one TBI serious enough to cause unconsciousness.

Traumatic brain injury as a chronic condition

What’s unique about the study, funded by the National Institute on Disability, Independent Living, and Rehabilitation Research, is that it has allowed researchers to not only see where a patient is at any one point in time, but also to understand how that patient got to that point.

“The big thing is that you don’t reach a point and then you’re stable,” says John Corrigan, PhD, co-principal investigator of the Ohio Regional TBI Model System. “It is dynamic, ongoing, and if you don't manage it, then you may get worse. But if you manage it, you have the ability to improve, even long after the injury. So, that's probably the single most important thing we’ve learned from a research point of view.”

He says a big emphasis during the past five years has been working with the health care system and other professionals to pivot thinking to this point of view.

“The model isn't, ‘You broke your leg, let it heal,’” Dr. Corrigan says. “Brain injury is more like diabetes or obesity, where you now have something that you're going to need to actively manage the rest of your life to get your best outcome.”

The project also benefits patients in the short term by more directly improving initial rehabilitation, says Jennifer Bogner, PhD, principal investigator of the Ohio Regional TBI Model System, which operates out of the Ohio Valley Center for Brain Injury Prevention and Rehabilitation at The Ohio State University Wexner Medical Center.

With additional funding from the National Institute of Neurological Disorders and Stroke, the Ohio Regional TBI Model System and others seek to establish which inpatient rehabilitation interventions are most successful at improving outcomes. This helps providers determine the best course of action for patients from the time they first start therapy after an injury.

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National TBI model system network

It’s estimated that 2.8 million Americans receive medical care each year for traumatic brain injuries as the result of falls, motor vehicle crashes, violence, athletics and military action.

The Ohio Regional TBI Model System center is one of 16 federally funded centers that are part of a national network created and initially funded in 1987 by the National Institute on Disability, Independent Living, and Rehabilitation Research. Having first received federal funding in 1997, the Ohio center is the longest continuously funded site. The most recent award of $2.26 million funds the program through mid-2027.

The goal is not only to improve the outcomes and lives of patients, but also of families and communities by increasing knowledge and providing comprehensive systems of traumatic brain injury care.

The national system analyzes data from all 16 centers, which have contributed several associated research studies and projects over the years. Sometimes these side projects, or “modules,” are collaborations of a small subgroup of centers, sometimes they’re studied by the full 16-center system.

For example, domestic violence survivor programming has changed across the country and world with the realization that many people who have suffered domestic violence have traumatic brain injuries related to blows to the head or choking injuries that limit oxygen to the brain.

In Ohio, the Brain Injury Rehabilitation Team at Ohio State’s Dodd Rehabilitation Hospital plays a pivotal role in supporting research, along with the trauma services of the Ohio State Wexner Medical Center, OhioHealth’s Grant Medical Center and Riverside Methodist Hospitals, Nationwide Children’s Hospital and Mount Carmel Health System. Research participants are recruited from the Brain Injury Unit at the Ohio State Wexner Medical Center.

Improving community care

Among the Ohio team’s contributions is the Ohio State University Traumatic Brain Injury Identification Method (OSU TBI-ID), a three- to five- minute interview that serves as a screening tool to assess a person’s lifetime history of TBI. It is used in almost every state in health care settings as well as by prisons, domestic violence shelters, substance use treatment centers, mental health systems and other social service agencies.

“Up until the point when we developed the OSU TBI-ID and started to use it, most of the field was thinking about traumatic brain injury as something that only occurred once in someone's life, at most twice,” Dr. Bogner says. “Actually, it's quite possible for people to sustain multiple traumatic brain injuries across their lifetime, and it can impact outcomes.”

The OSU TBI-ID was initially developed for providers who treat substance use disorders, with the realization that a large percentage of people with such disorders have a history of TBI. Providers started seeing better results when they began screening for TBI and learning to accommodate for injury by changing the way care was provided.

“Our health care providers, our community service providers, as they become more aware of the history of traumatic brain injury in their patients, they can adapt their services with accommodations for cognitive deficits. Through accommodations, the services that they provide are more accessible and therefore more effective,” Dr. Bogner explains.

The screening tool now has applications far beyond substance use treatment. While disorganization, a poor attention span or an inability to understand the impact of one’s behavior was once blamed on lack of motivation, there’s now a better understanding that brain injury could be the cause, and treatment plans can be catered to patients accordingly.

Looking to the future of TBI treatment

Dr. Bogner acknowledges that, over the years, increased awareness has been supported by greater public awareness about the impact of brain injuries sustained in military conflicts and sports. But there is still work to be done to foster understanding among health care providers and community service agencies that many of their patients have a history of traumatic brain injury. Armed with knowledge of exposure to traumatic brain injury, providers can learn how to adapt their services to maximize access and benefit to those with brain injury, Dr. Bogner says.

Ohio State is caring for the mental health of military personnel through a Zero Suicide initiative.

“There is still so much to do to try to get the policy and practices better aligned so that people who have had a brain injury are getting their best lives possible,” Dr. Corrigan adds. “I have no sense of the job being done. We have a long, long way still to go, although we have traveled a long way.”

Still, both are grateful for the opportunities they’ve had to work with patients and advocates toward better care and stronger communities.

“It is just very gratifying to know that the work that that we've been putting into this, in collaboration with people living with traumatic brain injury, has improved lives and has the potential to continue to improve how we can best serve persons with traumatic brain injury,” Dr. Bogner says.

For more information on TBI and additional resources, visit the Ohio Brain Injury Connection. The free, virtual service is part of the State of Ohio’s Ohio Brain Injury Program, which is managed by the Ohio Valley Center.