Experts call for lifelong care after brain and spinal injuries

In a new paper published in The Lancet Neurology, "Reframing traumatic brain injury and spinal cord injury as chronic multisystem disorders: toward integrated, long-term care," international experts across institutions and disciplines propose a fundamental shift in how traumatic brain and spinal cord injuries in adults are understood and managed. Sandro Marini, MD, of the Mass General Brigham Neuroscience Institute, is a co-first author, and Saef Izzy, MD, also of the Neuroscience Institute, is one of the co-senior authors, and the primary corresponding author.

Q: What challenges or unmet needs make this study important?

Traumatic brain injury (TBI) and spinal cord injury (SCI) are still frequently treated as isolated events with time-limited consequences. However, many survivors develop cardiovascular, metabolic, endocrine, neurological, psychiatric and functional complications that can continue or emerge years after the original injury. Despite this long-term burden, surveillance is often fragmented or absent once patients leave acute care and rehabilitation. As a result, complications may not be recognized until they cause hospitalization, functional decline or other preventable harm.

Q: What central question(s) were you investigating?

First, we asked whether TBI and SCI should be reframed as chronic multisystem conditions rather than as injuries that end when acute treatment and rehabilitation are completed.

We also examined what a practical, long-term care pathway would need to include and what changes, from clinical to workforce to policy, would be required to implement coordinated care across different health systems.

Q: What methods or approach did you use?

We searched multiple databases for English-language studies published between 2020 and 2026, focusing on prospective analyses of long-term outcomes after TBI or SCI, and consulted international experts and stakeholders. We then integrated this evidence with established chronic-care models - such as those for stroke, diabetes and cancer survivorship - to develop a practical blueprint for long-term neurotrauma care.

Q: What did you find?

The available evidence consistently indicates that neurotrauma can initiate biological, behavioral and social changes that persist for years or decades. These include issues like chronic inflammation, accelerated biological aging and increased cardiometabolic risk, to name a few. Yet most health systems continue to provide episodic support rather than coordinated long-term follow-up.

This Policy View builds on a sustained body of work at Mass General Brigham and elsewhere that has helped define this change in thinking. Over the past seven years, studies led by Izzy, Marini and colleagues, including large cohort analyses published in JAMA Network Open in 2022, 2024, August 2025 and November 2025, showed that survivors of traumatic brain and spinal cord injury face higher rates of new cardiovascular, endocrine, neurological and psychiatric conditions. Those studies helped establish the size and breadth of the long-term risk. This new paper in The Lancet Neurology takes the next step: it translates that evidence into a blueprint for care.

Based on these findings, we propose recognizing adult TBI and SCI as acute-onset, multisystem chronic-risk conditions. We outlined a prevention-first pathway that includes, but is not limited to, neurotrauma care navigators, scheduled multisystem screenings, telehealth-enabled care and direct connections to specialized services. We also identified seven priorities for implementation, spanning health policy (formal recognition of chronic neurotrauma, payment reform and longitudinal registries), clinical care (access to specialized rehabilitation and closer links with stroke, memory, psychiatric and epilepsy services) and workforce development and equity, along with building the economic evidence to sustain these changes.

Q: What are the real-world implications, particularly for patients?

For patients and families, the central message is that recovery and medical risk do not end at discharge. Some later complications may be preventable, and structured follow-up, clear information about long-term risks and a reliable point of contact, such as a care navigator, would help survivors recognize early warning signs, understand the purpose of recommended screening and take a more active role in their own preventive health.

The framework is deliberately tiered, from a core package that can be delivered with limited resources to intensive multidisciplinary care for patients with complex needs, so that every health system can begin with what it has. In lower-resource settings, a minimum dataset, community health workers, mobile health tools and teleconsultation can provide a practical starting point.

Q: Do you have any follow-up studies planned to validate or build on these findings?

Our next step is to characterize people living with TBI more precisely by combining longitudinal clinical information with multiomic data. This will help us better understand why some individuals develop particular long-term complications and identify distinct risk profiles. We then plan to use these findings to tailor prevention more effectively and prospectively test the care pathways and interventions proposed in this work.

Source:
Journal reference:

Marini S., et al. (2026) Reframing traumatic brain injury and spinal cord injury as chronic multisystem disorders: toward integrated, long-term care. The Lancet Neurology. DOI: 10.1016/S1474-4422(26)00297-8. https://www.thelancet.com/journals/laneur/article/PIIS1474-4422(26)00297-8/abstract

Comments

  1. A.J. King A.J. King United States says:

    While I like this proposal, it is only going to be effective if health care providers learn to ask better questions & create an environment of trust, so that the patients can open up. If the care providers are negligent (rushing through the appointments), the parents are negligent (because they don't understand the long term consequences), and the patient isn't honest & able to express themselves clearly (as was my case up until recently), it's not possible to be able to track the long term effects.

    Even if it needs all these things to line up, I still think this is a good plan even if it CAN help more people receive the proper care in the long term! I didn't realize how much of an impact it had on me, and how I almost wanted to end things (over a decade ago), and how vital it is that care providers listen, take notes, and save that information into a system that is accessible by other health care providers in the future.

    Until 4 months ago, I didn't know anything about what a primary care is SUPPOSED to do, insurance, referrals.....Everyone was negligent & dismissive (parents, medical professionals), so I became like them. Now that I switched to a new primary care provider, I have learned SOO much about what it means to care, trust, and what to do when doctor refers you to a specialist.

    I've had multiple instances of TBI & SBI growing up and now, 20 years later I'm sitting here dealing with the consequences of neglect (not blaming others because I've also been neglectful). My new PCP listens & takes notes to everything I say, which made me realize how important it is to be open & honest, and it makes me feel valued. So I do the same when they're speaking, as I write down everything we discuss, so we can work TOGETHER to formulate a plan. When they referred to get vaious imaging tests done, I was skeptical at first because I was worried about the costs, but insurance covered almost everything, and I realized it was to get an understanding of my current health.

    When I have labwork done, I'm not just given a report with terms I don't understand & numbers that tell me high, normal, low but what it actually means. When they refer me to a specific specialist, I trust their judgement & go and they've never steered me wrong. In the past 4 months, I've actually gotten more involved & it helped me quit my habit of smoking (which I'd been doing for the past 20 yrs). I'm only 35 so go figure.

The opinions expressed here are the views of the writer and do not necessarily reflect the views and opinions of News Medical.
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