Development of New TBI Classification Framework Underway
Categories: Living with Brain Injury, Research
By Lauren Moore, Brain Injury Association of America
When patients with traumatic brain injury are treated in a medical setting following an event that results in a TBI, medical professionals typically label their injury as being mild, moderate, or severe. This label, however, is “inaccurate, outdated, and does not effectively serve patients, clinicians, or payers,” according to the National Academies of Sciences, Engineering, and Medicine.
In its 2022 report “Traumatic Brain Injury: A Roadmap for Accelerating Progress,” the National Academies of Sciences, Engineering, and Medicine reported that TBI care in the United States often fails to meet the needs of individuals, families, and communities affected by this condition. According to their report, high-quality care for TBI requires that it be managed as a condition with both acute and long-term phases; public and professional misunderstandings are widespread with respect to frequency, manifestations, long-term consequences, and proper detection, treatment, and rehabilitation of TBI; and the United States lacks a comprehensive framework for addressing TBI.
Among the goals outlined in the report is the creation and implementation of an updated classification system for TBI, citing the need for a more nuanced, personalized, and evidence-guided taxonomy for TBI that uses clinical and biological markers to support more effective assessment, treatment, prognosis, and rehabilitation, with the recommendation that the National Institutes of Health convene a TBI Classification Workgroup to advance this goal.
To that end, a group of medical professionals and researchers specializing in brain injury and neurotrauma are working to establish a reclassification system for TBI patients, moving away from the “mild, moderate, or severe” verbiage and putting a greater emphasis on factors such as a patient’s Glasgow Coma Scale score, imaging, bloodbased biomarkers, and premorbidity. The group will be presenting their recommendations at the National Institute of Neurological Disorders and Stroke (NINDS) 2024 Traumatic Brain Injury Classification and Nomenclature Workshop in January 2024.
“There are too many times where these labels either make it hard for a person to get the care they need, or when these labels put people in a category that can set expectations that our research suggests turns out to not be true,” said Dr. Kristen Dams- O’Connor, director of the Brain Injury Research Center of Mount Sinai. “I think we can do better with the research we’ve all done over the past decade. We have information that will allow us to better align clinical care and research interventions with the types of injuries that people have sustained.”
Dr. Geoffrey Manley, chief of neurosurgery at Zuckerberg San Francisco General Hospital and vice chairman of neurological surgery at University of California-San Francisco, shared that over the past 10 years, large data collection efforts have been undertaken in order to provide a more precise description of patients in order to improve clinical care and research. In many cases, the existing terminology is not indicative of a patient’s recovery.
“Patients who are labeled Day One with mild TBI are no longer employed at one year, or are disabled – we’ve seen a lot of disability in this population, which suggest the term ‘mild’ is not precise,” Dr. Manley explained. He added that 49 percent of people in the Trauma Quality Improvement Program database who died, passed from withdrawal of life-saving therapies. “By being more precise in our descriptions, we hope to stop that,” Dr. Manley said. Conversely, he added, the term “severe” can promote nihilism, and leave patients feeling as though they’re stuck with a particular label that inhibits their recovery.
“From a scientific and medical treatment perspective, it’s a crude classification, it doesn’t allow us to target specific sub-groups of patients with significant interventions,” explained Dr. Andrew Maas, emeritus professor of neurosurgery at Antwerp University Hospital. He added that patients are unhappy with this classification system, especially patients who fall under the “mild” designation. “The complaints these patients have are not being recognized.”
One of the main themes that the group is focusing on is that compared to other diseases or conditions, assigning patients with a mild, moderate, or severe diagnosis is unusual.
“In the age of precision medicine, I don’t know of any disease out there where stratifying patients to specific individual treatment is as blunt as ‘mild, moderate, or severe’,” Dr. Michael McCrea, director of the Brain Injury Research Program at the Medical College of Wisconsin said. “By more richly characterizing TBI patients, we can guide them to individualized treatment that provides the best chance at survival, functional recovery, and favorable outcome.”
Dr. Nsini Umoh, program director in the neuroscience division of the NINDS, pointed out that the development and implementation period is not an overnight process, and that it could take years to determine if it is an improvement over the existing system. “Whatever is proposed is going to need to be evaluated,” she explained, adding that there will be time for public feedback.
Added Dr. Dams-O’Connor, “We really need to know if the new classification is going to address the concerns raised by people living with brain injury and their families.”
However, Dr. Manley said, “If all we can do is really socialize this idea that we should not be using mild/moderate/severe terminology, that we have tools that are much more descriptive and precise, at least for Day One, we should do this,” adding that he would be “over the moon” to get to a point where a patient’s blood-based biomarkers, GCS, and imaging were given greater consideration. “The goal is to explain why not to use those terms anymore, that there’s a lot of data to support using imaging and blood-based biomarkers, at least in acute diagnosis.”
This article originally appeared in Volume 17, Issue 2 of THE Challenge! published in 2023.
