Traumatic brain injury (TBI) and spinal cord injury (SCI) should be managed as chronic, multisystem conditions requiring lifelong follow-up, experts said.

In a Policy View, an international panel of 29 specialists in neurology, rehabilitation, neurosurgery, and related fields proposes a prevention-first pathway built around neurotrauma care navigators; scheduled screening; telehealth; and closer links with stroke, cardiometabolic, memory, psychiatric, and epilepsy services.

“This would change how we think about the injury itself. Right now, most of us treat TBI and [SCI] as something that happens, gets managed in the hospital and in rehab, and then is largely over. The data tell a different story,” panelist Sandro Marini, MD, and Saef Izzy, MD, of Mass General Brigham Neuroscience Institute in Boston, wrote in a joint email to Medscape Medical News.

Because most health systems stop following patients after rehabilitation, these complications often go undetected until they lead to hospitalization, functional decline, or death, the authors noted.

The paper was published online on October 14 in The Lancet Neurology.

Beyond Acute Injury

Although advances in emergency treatment and rehabilitation have improved survival after TBI and SCI, growing evidence indicates that the consequences can extend far beyond the initial injury.

Survivors have elevated risks for hypertension, diabetes, cardiovascular disease, stroke, dementia, epilepsy, depression, and other psychiatric disorders. TBI can also cause pituitary dysfunction, whereas patients with SCI have additional risks related to autonomic dysfunction, bladder and bowel problems, infections, and respiratory disease.

These complications can emerge or worsen long after injury, even after relatively mild TBI. More than half of the people with moderate-to-severe TBI decline functionally or die within 5 years of injury, the authors noted.

For neurologists, the proposed framework would mean counseling patients and families about the lasting risks for neurotrauma and structuring follow-up around those risks rather than waiting for symptoms to emerge, said Izzy and Marini.

Cardiovascular disease is a prime example, they noted. TBI is associated with increased stroke risk, even in young adults, and patients with both TBI and cardiovascular disease have a higher dementia risk than those with either condition alone.

Posttraumatic epilepsy is another concern. New episodes of confusion or lapses in attention after TBI should raise suspicion for nonconvulsive seizures, which may go unrecognized. Patients with both TBI and posttraumatic epilepsy also have greater dementia risk, warranting closer cognitive monitoring, they noted.

“The goal is earlier detection and prevention rather than discovering these complications at the next hospitalization,” Izzy and Marini noted.

How It Would Work

To address gaps in care, the panel proposed integrating long-term neurotrauma management into existing healthcare services rather than creating an entirely separate system.

Primary care would serve as patients’ medical home, managing their ongoing care and coordinating with neurologists and rehabilitation specialists who would provide expertise in cognition, seizures, stroke prevention, and functional recovery.

“It has to be shared. No one specialty can cover all of this, and we don’t think one should try,” Izzy and Marini said.

Central to the approach is a dedicated care navigator, such as a nurse, social worker, or trained community health worker, who would help coordinate follow-up and ensure patients receive recommended screening and referrals.

“Mostly, patients would notice that someone is still keeping track of them. Today, a patient leaves rehab and is largely on their own, trying to figure out which specialist to see for which problem. In this model, they’d stay connected to a care pathway, ideally with a navigator they can call,” Izzy and Marini noted.

The proposed pathway includes scheduled screening for cardiovascular risk factors, endocrine abnormalities, cognitive changes, and mental health conditions, along with targeted monitoring for complications such as epilepsy, chronic pain, and autonomic dysfunction.

A Scalable Model

To illustrate how this might work, Izzy and Marini described a hypothetical case involving a 34-year-old woman recovering from moderate TBI after a motor vehicle crash.

Under the proposed model, scheduled screening would identify growth hormone deficiency at 3 months, elevated blood pressure at 6 months, depressive symptoms at 1 year, and cognitive decline at 2 years. Each finding would prompt timely treatment or specialist referral rather than waiting for symptoms to worsen or complications to lead to hospitalization.

“None of those problems was found because she ended up in the emergency department. Each was caught on a schedule, and each led straight to the right care,” said Izzy and Marini.

At the most basic level, healthcare systems could document neurotrauma history in electronic health records and establish routine blood pressure and mental health screening.

More advanced models would add dedicated care coordinators and telehealth consultations, whereas well-resourced centers could offer comprehensive multidisciplinary care.

“We intentionally designed the framework to be scalable rather than dependent on building a new multidisciplinary clinic everywhere,” Izzy and Marini said.

The simplest first step, they suggested, is documenting neurotrauma history in electronic health records and establishing standardized screening and referral pathways.

The panel also called for changes in healthcare financing, expanded patient registries, workforce training, and greater investment in rehabilitation and preventive services, with the goal of reducing avoidable hospitalizations, disability, and premature mortality.

‘A Compelling Case for Change’

The Policy View authors acknowledged that relatively few randomized trials have tested comprehensive chronic-care models specifically for TBI and SCI. Much of the supporting evidence comes from observational studies and established care models for other chronic conditions, including stroke, diabetes, and cancer survivorship.

Nevertheless, they argued that the available evidence is sufficient to justify a shift toward structured surveillance and prevention, accompanied by studies assessing its clinical and economic benefits.

The Policy View makes a “compelling case for change,” the editors of The Lancet Neurology wrote in an accompanying editorial.

However, they cautioned that more research is needed, particularly to identify which patients with apparently mild injuries require long-term follow-up. They also noted that evidence linking neurotrauma to accelerated aging is preliminary and that patients’ age and frailty at the time of injury may warrant special consideration.

Despite those uncertainties, one outside expert sees the proposed shift as urgent. Shaheen Lakhan, MD, PhD, a neurologist and researcher in Miami who was not involved in the paper, said this proposal is “decades overdue.”

“We’ve confused survival with recovery and discharge with resolution. Neither is the same thing,” Lakhan said. “A patient may leave rehabilitation only to develop cardiovascular, endocrine, cognitive, or psychiatric complications years later, with nobody connecting the dots back to the original injury.”

He believes the framework is realistic, particularly if healthcare systems build on what’s already in place rather than create entirely new programs.

Lakhan added that “the greater obstacle is a reimbursement system that readily pays for complications but struggles to pay for preventing them.”

Success should be measured not just by how many patients survive neurotrauma but also by how well they live in the decades that follow, Lakhan said, adding that prospective studies are needed to show that such models improve outcomes.

The authors reported various research grants and financial relationships, detailed in the publication. Marini declared no competing interests. Izzy reported receiving research funding from the National Institutes of Health and US Department of War and royalties from McGraw Hill. Lakhan had no disclosures.