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Driving Progress and Practice: Why Research is Essential to the Field of Brain Injury

Categories: ACBIS Insider

By Shannon Juengst

Research on traumatic brain injury (TBI) dates back as far as the 19th century, growing mostly from studies of military service members with brain injuries or case studies of penetrating head injuries that resulted in dramatic emotional and cognitive changes (e.g., Phineas Gage).

Into the early 20th century, rapid advancements in the fields of neurology, neurosurgery, and psychology led to early ways of classifying brain injury – by type and severity – and a growing understanding of brain anatomy and acute injury consequences. TBI in service members again drove progress, with a surge of cases in the wake of World War II that resulted in a shift in research and clinical care to early forms of therapy focused on functional recovery and independence. Standardized assessment tools were developed, mostly focused on motor and cognitive impairment after injury. These assessments enabled a better understanding of the challenges individuals with brain injury faced, which in turn led to more targeted interventions in clinical practice. As research focused more on cognitive consequences of TBI, there was a growing recognition that these consequences could be long-term and that cognitive strategies were needed to compensate for deficits in memory, attention, and executive dysfunction (in addition to physical adaptations and compensatory strategies).

With discoveries that neuroplasticity is possible during the late 20th century, we first understood that functional recovery could improve even long after injury and therapeutic interventions shifted accordingly. Technology – like electronic and mobile health (eHealth/mHealth) systems, MRI/fMRI, virtual reality, robotics, and AI – continues to rapidly advance, creating new possibilities for deeper understanding and more targeted therapies for brain injury. Over the past decade and a half, we’ve witnessed the emerging recognition that brain injury is often a chronic condition, rather than a discrete medical event from which one will “recover.” This has led to more focus on long-term adaptation to maximize function, promoting self-management and supporting care partners, and developing chronic care models for brain injury.

Research in the field of brain injury both informs and emerges from clinical practice. It directly informs clinical practice guidelines, decision tools, and policy that can have a dramatic impact on the lives of those who experience brain injury. Multidisciplinary partnerships between interdisciplinary clinicians and researchers, healthcare systems and community organizations, industry partners, and – perhaps most importantly – people with lived experience of brain injury are increasingly common and necessary to support and implement evidence-based practice. Indeed, evidence-based practice, by definition, is employing the best available evidence (research) in conjunction with clinical expertise and the values and preferences of the patient and their families.

Following are just three recent examples of the transformative and profound changes that brain injury research has produced.

  1. Guidelines for Cognitive Rehabilitation. In 2023, the international group of cognitive researchers and clinicians known as INCOG published the updated INCOG 2.0 Guidelines for Cognitive Rehabilitation following Traumatic Brain Injury based on the extant published body of research in the field.1 In total, these guidelines now provide 80 evidence-based recommendations and clinical algorithms to guide clinical decision-making.
  2. Disorders of Consciousness. Another example of how practice guidelines and clinical recommendations are continuously evolving in response to emerging research findings, a multi-organization subcommittee updated practice recommendations in 2018 for working with individuals with prolonged disorders of consciousness (DoC) based on evidence, clinical expertise, and systemically gathered input from the field.2 Perhaps most notable among these updated recommendations is that prognosis is not “universally poor”. Indeed, in the six years since this update was published, numerous studies and research reviews have demonstrated that we – as a field – are not very good at long-term prognosis after DoC (tending to be overly negative in our prognosis).3,4 A 2024 mega-analysis of over 3,000 patients with DoC concluded that clinicians need to “exercise caution when making negative predictions” and “challenge traditional beliefs regarding recovery timelines”.4 Further, research on outcomes other than mortality and global disability that might be meaningful to individuals and their families (like life satisfaction) clearly demonstrates that those with DoC can have good quality of life, even in the presence of severe disability.
  3. TBI as a Chronic Condition. In June, the Centers for Medicare and Medicaid Services (CMS) officially added TBI to its list of chronic conditions (effective January 1, 2025). With this formal recognition, individuals with TBI will be able to obtain additional public health resources and insurance benefits that are provided when a person has a formally recognized chronic condition to better support them as they manage the effects of their brain injury across their lifespan. This represents a culmination of efforts from clinicians, researchers, community organizations, and advocates. The Brain Injury Association of America pushed for this recognition, summarizing decades of research and the perspectives of persons with lived experience to support their position.5

Though certainly transformative, these examples don’t capture all the myriad large and small ways that research is important in the brain injury field. More than just changing practice, it changes perspectives, beliefs, and lives. Again and again, I hear from research participants how much just being involved in studies has changed their lives. It might be because they get access to an intervention that they might not otherwise have been able to get, or that they feel like by sharing their experiences through research, they are helping others like themselves. And recently, research in the field has emphasized the importance of including people with lived experience, not only as advisors and participants, but as active collaborators. From what I have experienced and seen already, I believe that this paradigm shift will transform brain injury research, and subsequently practice, in ways we cannot yet imagine.

References

    1. Bayley MT, Janzen S, Harnett A, et al. INCOG 2.0 Guidelines for Cognitive Rehabilitation Following Traumatic Brain Injury: Methods, Overview, and Principles. J Head Trauma Rehabil. 2023;38(1):7. doi:10.1097/HTR.0000000000000838
    2. Giacino JT, Katz DI, Schiff ND, et al. Practice guideline update recommendations summary: Disorders of consciousness. Neurology. 2018;91(10):450-460. doi:10.1212/WNL.0000000000005926
    3. Golden K, Bodien YG, Giacino JT. Disorders of Consciousness: Classification and Taxonomy. Phys Med Rehabil Clin N Am. 2024;35(1):15-33. doi:10.1016/j.pmr.2023.06.011
    4. Pavlov YG, Spiegelsberger F, Kotchoubey B. Predicting outcome in disorders of consciousness: A mega‐analysis. Ann Clin Transl Neurol. 2024;11(6):1465-1477. doi:10.1002/acn3.52061
    5. Brain Injury Community Pushes for Recognition of Brain Injury as a Chronic Health Condition. Brain Injury Association of America. Accessed August 22, 2024. https://biausa.org/public-affairs/public-awareness/news/brain-injury-community-pushes-for-recognition-of-brain-injury-as-a-chronic-health-condition