Care for traumatic brain injury (TBI) in the US often fails to meet the needs of affected individuals, families, and communities, and progress is hobbled by both an outdated system for classifying cases and the absence of a comprehensive framework for providing care, according to a new consensus study report from the National Academies of Sciences, Engineering, and Medicine.
The report describes the conclusions of a committee of TBI experts, convened at the request of the US Department of Defense. The committee was charged with formulating strategies to advance progress in TBI care and researching and developing a “roadmap” to help guide the field.
“Traumatic brain injury has resulted in preventable deaths, societal costs, and lost human potential,” said Victor J. Dzau, president of the National Academy of Medicine, in a statement. “Now is the time to redesign research, ensure seamless care transitions, and develop a TBI learning system that strives for continuous quality improvement.”
According to the Centers for Disease Control and Prevention, each year, an estimated 1.5 million people in the US sustain a TBI—injuries sustained in falls and during sports, motor vehicle crashes, violence, and military combat—and an estimated 5.3 million US residents are living with a permanent TBI-related disability. Current interventions can prevent further injury and help manage symptoms, but care often is not meeting patients’ needs.
“Despite prior efforts and progress, barriers and challenges remain, including unanswered questions about the most effective preventive, acute, rehabilitative, and long-term care for TBI,” the TBI report says.
For example, the committee notes that TBI can lead to long-term motor, sensory, psychological, behavioral, and cognitive problems and should be viewed and managed as a condition with symptoms and challenges that evolve over time. However, evidence suggests that many individuals with TBI lack continuity of care, integrated and multidisciplinary specialized care, or adequate health insurance. Many are lost to follow-up, which leaves clinicians and researchers unable to measure TBI’s long-term effects and use the information to improve care.
The authors urge professional societies and social service agencies to work toward ensuring that TBI patients achieve reliable and timely access to integrated, multidisciplinary, and specialized care to address the myriad potential effects of TBI and comorbidities that influence quality of life. The report also recommends interventions for family caregivers, who report considerable stress in addressing the needs of a family member with TBI.
To help speed progress, an updated classification system is needed to better guide care and inform research, the report says. The outdated and imprecise current TBI classifications of mild, moderate, or severe should be replaced by a more personalized and evidence-guided classification system that uses clinical and biological markers.
The report advises classifying patients using the full Glasgow Coma Scale score, a system that grades the severity of TBI on a scale from 3 to 15, as well as results from brain computed tomography scans and blood tests. It also urges the National Institutes of Health to convene a TBI Classification Workgroup and notes that because initial assessment of a person’s condition does not reliably predict ultimate outcome, “regular reassessment is also essential as a person’s condition and needs change.”
The report also recommends measures to ensure quality and consistency of care, noting that “guidelines and best practices need to be consistently implemented, including to guide reimbursement practices.” It calls on federal agencies, such as the Department of Veterans Affairs, the Department of Defense, and the Agency for Healthcare Research and Quality, to convene an expert panel at regular intervals to update and harmonize clinical practice guidelines, including evidence obtained not only from randomized controlled trials but also from other study designs and from “expert consensus on best practices.”
In addition, the committee said, the Centers for Medicare & Medicaid Services and private payers should ensure that coverage of TBI patient care and rehabilitation is based on criteria that are consistent with clinical guidelines. The latter, they note, are preferable to the “3-hour rule,” which, as a condition for paying for comprehensive interdisciplinary rehabilitation services, requires patients to have enough energy to actively engage in therapy for a 3 hours a day, 5 days per week.
Widespread use of this rule “is a significant barrier to care” for patients who, despite being unable to meet this requirement at the time they are evaluated, may nonetheless experience improvement if they receive the intervention, the report notes.
Noting that research on TBI may be underfunded in part because the public and policy makers are not aware of the magnitude of TBI’s burden in terms of morbidity, mortality, and costs, the committee said that the Centers for Disease Control and Prevention should work with organizations involved in TBI prevention, care, and rehabilitation to enhance awareness and understanding of the condition. The group also recommends education and training programs for health care professionals, including providing materials that emphasize adherence to evidence-based guidelines to foster greater consistency in TBI care across the nation.
Efforts to address the treatment of TBI also should be part of a “learning care system” that includes processes for continual quality improvement and education, the report says. To move toward this goal, federal agencies should work to establish a TBI data system to track TBI deaths, morbidity, and long-term outcomes more completely and accurately.
This effort should involve collaboration with health care systems and electronic health record vendors to develop the ability to capture high-quality, TBI-relevant data in medical records, the report notes, facilitating research on causal factors and effects of interventions.
In addition, the report advises the US Secretary of Health and Human Services to establish a national TBI Task Force to create a national framework and implementation plan for improving TBI care within 2 years.
“The lack of a central leadership body for transforming TBI care at either the national or regional level is a real threat to the needed follow-through,” committee chair Donald Berwick, MD, president emeritus and senior fellow of the Institute for Healthcare Improvement, noted in the report, which he described as a blueprint for action. “Literally millions of people with TBI, present and future, depend now on action to achieve the care and outcomes that science, present and future, can make possible for them.”
Published: February 8, 2022. doi:10.1001/jamahealthforum.2022.0309
Open Access: This is an open access article distributed under the terms of the CC-BY License. © 2022 Stephenson J. JAMA Health Forum.
Corresponding Author: Joan Stephenson, PhD, Consulting Editor, JAMA Health Forum (Joan.Stephenson@jamanetwork.org).
Conflict of Interest Disclosures: None reported.
Stephenson J. Experts Craft “Roadmap” to Speed Progress in Traumatic Brain Injury Care. JAMA Health Forum. 2022;3(2):e220309. doi:10.1001/jamahealthforum.2022.0309
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