TRAUMATIC
BRAIN INJURY

A ROADMAP FOR ACCELERATING PROGRESS

Donald Berwick, Katherine Bowman, and Chanel Matney, Editors

Committee on Accelerating Progress in Traumatic Brain Injury Research and Care

Board on Health Sciences Policy

Board on Health Care Services

Health and Medicine Division

A Consensus Study Report of

THE NATIONAL ACADEMIES PRESS
Washington, DC
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This activity was supported by Contract No.W81XWH20C0126 between the National Academy of Sciences and the United States Army Medical Research and Development Command of the Department of Defense. Any opinions, findings, conclusions, or recommendations expressed in this publication do not necessarily reflect the views of the United States Army Medical Research and Development Command that provided support for the project.

International Standard Book Number-13: 978-0-309-49043-6
International Standard Book Number-10: 0-309-49043-X
Digital Object Identifier: https://doi.org/10.17226/25394
Library of Congress Catalog Number: 2022933295

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Suggested citation: National Academies of Sciences, Engineering, and Medicine. 2022. Traumatic brain injury: A roadmap for accelerating progress. Washington, DC: The National Academies Press. https://doi.org/10.17226/25394.

COMMITTEE ON ACCELERATING PROGRESS IN TRAUMATIC BRAIN INJURY RESEARCH AND CARE

DONALD BERWICK (Chair), President Emeritus and Senior Fellow, Institute for Healthcare Improvement, Boston, Massachusetts

JENNIFER BOGNER, Professor, Department of Physical Medicine and Rehabilitation, College of Medicine, The Ohio State University

MATTHEW FINK, Chair, Department of Neurology; Louis and Gertrude Professor, Weill Cornell Medical College; and Neurologist-in-Chief and Chief, Division of Stroke and Critical Care Neurology, NewYork-Presbyterian Hospital, New York

JESSICA GILL, Bloomberg Distinguished Professor, Johns Hopkins University School of Nursing and School of Medicine, Baltimore, Maryland

ODETTE HARRIS, Professor of Neurosurgery, Stanford University, and Director of Brain Injury and Deputy Chief of Staff, Rehabilitation, VA Palo Alto Health Care System, California

SIDNEY R. HINDS II, Colonel, United States Army (retired), and Vice President for Brain Health Strategy and Research, Wounded Warrior Project, Washington, DC

FREDERICK KORLEY, Associate Professor, Department of Emergency Medicine, University of Michigan

ELLEN J. MACKENZIE, Bloomberg Distinguished Professor and Dean, Johns Hopkins Bloomberg School of Public Health, Baltimore, Maryland

GEOFFREY MANLEY, Margaret Liu Endowed Professorship in Traumatic Brain Injury, Professor and Vice Chairman of Neurological Surgery, and Co-Director, Brain and Spinal Injury Center, University of California, San Francisco; and Chief of Neurosurgery, Zuckerberg San Francisco General Hospital, California

SUSAN MARGULIES, Assistant Director, National Science Foundation Directorate for Engineering and Professor, Wallace H. Coulter Department of Biomedical Engineering, Georgia Institute of Technology and Emory University, Atlanta, Georgia

CHRISTINA L. MASTER, Professor of Clinical Pediatrics, University of Pennsylvania Perelman School of Medicine, and Children’s Hospital of Philadelphia, Pennsylvania

MICHAEL MCCREA, Shekar N. Kurpad, MD, PhD Chair in Neurosurgery and Co-Director, Center for Neurotrauma Research, Department of Neurosurgery, Medical College of Wisconsin

HELENE MORIARTY, Professor and Diane & Robert Moritz, Jr. Endowed Chair in Nursing Research, Villanova University M. Louise Fitzpatrick College of Nursing; and Nurse Scientist, Corporal Michael J. Crescenz VA Medical Center, Philadelphia, Pennsylvania

CORINNE PEEK-ASA, Vice Chancellor for Research, University of California, San Diego

THOMAS SCALEA, Physician-in-Chief, R Adams Cowley Shock Trauma Center and System Chief for Critical Care Services, University of Maryland Medical System, Baltimore, Maryland

ERIC SCHOOMAKER, Lieutenant General, United States Army (retired); 42nd Army Surgeon General and Former Commanding General, U.S. Army Medical Command; Emeritus Professor, Uniformed Services University of the Health Sciences, Bethesda, Maryland; and Senior Physician Advisor, Office of Patient-Centered Care & Cultural Transformation, Veterans Health Administration, Department of Veterans Affairs

MARTIN SCHREIBER, Chief, Division of Trauma Critical Care and Acute Care Surgery, Professor of Surgery, and Director, Donald D. Trunkey Center for Civilian and Combat Casualty Care, Oregon Health & Science University; and Adjunct Professor of Surgery, Uniformed Services University of the Health Sciences, Bethesda, Maryland

MONICA S. VAVILALA, Professor, Anesthesiology and Pain Medicine and Pediatrics, and Director, Harborview Injury Prevention and Research Center, University of Washington

Study Staff

KATHERINE BOWMAN, Study Director

CLARE STROUD, Senior Program Officer

CHANEL MATNEY, Program Officer

BRIDGET BOREL, Research Associate (until July 2021)

EDEN NELEMAN, Senior Program Assistant (from July 2021)

CHRISTIE BELL, Finance Business Partner

ANDREW M. POPE, Senior Director, Board on Health Sciences Policy

SHARYL NASS, Senior Director, Board on Health Care Services

National Academy of Medicine Fellow in Osteopathic Medicine

JULIEANNE P. SEES, Pediatric Neuro-Orthopaedic Surgeon and Associate Professor, Departments of Orthopaedic Surgery and Pediatrics, Thomas Jefferson University School of Medicine, Philadelphia, Pennsylvania

Consultants

RONA BRIERE, Senior Editor, Briere Associates, Inc.

ALLIE BOMAN, Editorial Assistant, Briere Associates, Inc.

MARGARET SHANDLING, Editorial Assistant, Briere Associates, Inc.

ANNA NICHOLSON, Science Writer, Doxastic, Inc.

JON WEINISCH, Science Writer, Doxastic, Inc.

Reviewers

This Consensus Study Report was reviewed in draft form by individuals chosen for their diverse perspectives and technical expertise. The purpose of this independent review is to provide candid and critical comments that will assist the National Academies of Sciences, Engineering, and Medicine in making each published report as sound as possible and to ensure that it meets the institutional standards for quality, objectivity, evidence, and responsiveness to the study charge. The review comments and draft manuscript remain confidential to protect the integrity of the deliberative process.

We thank the following individuals for their review of this report:

Although the reviewers listed above provided many constructive comments and suggestions, they were not asked to endorse the conclusions or recommendations of this report nor did they see the final draft before its release. The review of this report was overseen by DAN G. BLAZER, Duke University Medical Center, and ALAN M. JETTE, MGH Institute of Health Professions. They were responsible for making certain that an independent examination of this report was carried out in accordance with the standards

of the National Academies and that all review comments were carefully considered. Responsibility for the final content rests entirely with the authoring committee and the National Academies.

Acknowledgments

The committee would like to express its gratitude to the many people and families dealing with traumatic brain injury and the scientists and clinicians who generously lent their time and insight to this project. The committee is also grateful for the contributions of Rona Briere, senior editor, and Allie Boman and Margaret Shandling, editorial assistants, Briere Associates, Inc.; Anna Nicholson and Jon Weinisch, science writers, Doxastic, Inc.; Tony Teat and Chantelle Bynum, Masai Interactive; and Christopher Lao-Scott, senior librarian of the National Academies Research Center, for his crucial assistance with fact checking.

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Preface

I came to my role as chair of this committee as a newcomer to the topic of traumatic brain injury (TBI). Like any physician—indeed, like any adult—I knew of people whose acute injury from a contact sport, a bicycle accident, or a nursing home fall had led to sidelining for a “concussion,” a period of memory loss, or evacuation of a subdural hematoma. “TBI” was for me the name of an unfortunate, usually obvious, accidental episode, occasionally followed by acute intervention. Mild cases resolved, and severe ones led to lifelong functional loss. It was a serious topic, but, in its way, rather simple.

I did not realize how wrong I was. Now, after 15 months of hard work with a superb committee of clinicians, research scholars, and epidemiologists who have devoted their careers to the study and care of TBI, and after eloquent testimony from people living with TBI and their families, I can see the topic more accurately for what it is: complex in texture, massive in scale, full of important research challenges, and largely as unrecognized—or as misunderstood—by the public and most clinicians as it was initially to me. TBI is not the name of an isolated, sometimes dramatic, but largely evanescent event. Instead, TBI is a significant, but remarkably hidden, burden for patients, families, public health, and health care costs throughout the nation, and in every demographic group.

As a longtime student of the deficiencies and opportunities for improvement in chronic disease care and outcomes, I can now recognize in TBI an iconic example of how care as currently designed can fail to reliably meet the needs of people facing chronic, life-changing health care challenges. And, just as for chronic illness broadly, I can see the exciting range of achievable improvements in TBI care, outcomes, and cost if only we set the proper goals and begin to act as an integrated system toward meeting those goals.

From its inception, the members of this committee embraced the value of teamwork and systems thinking in both TBI care and TBI research. They did so in their own work as a committee and in the vision of improvement that they shared for the nation. They rejected, as the clinical community must, the siloing of TBI into specialty channels, and instead noted and celebrated the interdependencies upon which successful TBI care depends: among medical and surgical specialties; among phases of patients’ journeys from the point of injury through

acute care into timely rehabilitation and, when needed, through lifelong support; between care systems and community systems; and from bench research to bedside application. The committee directly confronted the gaps between current but inadequate conventions of TBI classification (as “mild,” “moderate,” and “severe”) and the more mature understandings of biomarkers, clinical observations, and sequential assessments that support evidence-based management and accurate prognostication. “Mild TBI,” they clarified, is often not mild at all in its consequences, and “severe TBI” can have highly favorable outcomes with proper supports. They came to issue a clear call for a new TBI classification system. Much TBI, they concluded, remains undetected, and its behavioral and physical effects misattributed, because too few clinicians and laypeople understand its various forms and masquerades. They came to call, as well, for an end to that ignorance.

The committee agreed early on that clinicians and patients would need a comprehensive set of “bio-psycho-socio-ecological” lenses to see TBI truly in all its dimensions, and that care and concern over time—not just in terms of a bounded episode—were the proper tools for the best possible outcomes and the most responsive and compassionate support. No committee member is likely ever to forget the poignant workshop testimony from patients who described the sense of being “lost” or “forgotten” by a health care system lacking the integration and memory it would have needed to accompany them effectively through their changed lives with their altered needs. The understanding thus gained led the committee to address system design and leadership as inescapably vital resources. TBI, they came to recognize, is a clinical topic largely without a home in American health care, a public health challenge with no identifiable, responsible national or regional owner—no place the buck stops for the design and management of integrated systems of TBI care over time and place. That is not a problem easy to solve in a fragmented health care system, but neither is it one that will go away of its own accord.

I owe a deep debt to the members of the committee I was privileged to chair. Their gracefulness with each other, their shared respect, their willingness to reach across disciplinary boundaries, and their extraordinarily hard work, layered on their busy day (and night) jobs, impressed me at every step. Nothing the National Academies staff and I asked of them seemed too big for them to jump on and carry out quickly and reliably. I have never led a more capable and generous group, and I thank them, each and every one. And as the committee knows, every particle of progress and every positive element of our report traces directly to the skill, resilience, and good humor of the National Academies staff we were blessed to work with: our study director, Katie Bowman, and her Olympic-quality team of Clare Stroud, Chanel Matney, Bridget Borel, and Eden Neleman. They made my role as chair a pleasure and, frankly, for a topic of this size, easy. I am deeply grateful.

Like all chairs of National Academies committees and all committee members and staff, my fondest hope now is that the fate of this ambitious report is not to end up on shelves. It is a working document and a blueprint for action. 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. 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. If the buck stops somewhere for systemic redesign of TBI care, as it has not yet done, the gains in life, function, joy, and treasure can be immense. If TBI care as a system remains leaderless and rudderless, immense also will be the continuing human and societal costs.

Donald Berwick, Chair
Committee on Accelerating Progress in Traumatic Brain Injury Research and Care

Contents

SUMMARY

1 INTRODUCTION

Study Context

Study Purpose, Scope, and Approach

Organization of the Report

References

2 THE SCOPE AND BURDEN OF TRAUMATIC BRAIN INJURY

Frequency of Traumatic Brain Injury

Economic Costs

Conclusions

References

3 UNDERSTANDING PATIENTS WITH TRAUMATIC BRAIN INJURY

The Patient Journey and TBI Prevention, Care, and Recovery

A Framework for Understanding TBI: The Bio-Psycho-Socio-Ecological Model

Intersection of TBI with Other Conditions

Conclusions

References

4 TRAUMATIC BRAIN INJURY PREVENTION AND AWARENESS

The Role of Prevention

Awareness and Misunderstanding of TBI

Conclusions

References

5 ACUTE CARE AFTER TRAUMATIC BRAIN INJURY

Overview of Care Provided During the Acute Phase after TBI

TBI Classification

Tools for Acute Evaluation of TBI

The Role of Clinical Practice Guidelines in Informing Acute TBI Care

Prehospital Evaluation and Treatment of TBI

Hospital-Based Evaluation and Care

Variation in Content of and Adherence to Clinical Care Guidelines

Preparation for Transfer to Post-Acute Care

Special Challenges in Acute TBI Management

Additional Considerations

Conclusions

References

6 REHABILITATION AND LONG-TERM CARE NEEDS AFTER TRAUMATIC BRAIN INJURY

Target Goals and Outcomes of Care

Current Care Pathways after Acute TBI Care

Long-Term and Community-Based Services

Long-Term Care for TBI as a Chronic Condition

Addressing Needs of Specific TBI Populations

Unmet Family and Caregiver Burdens

Unmet Needs in the Current System of TBI Rehabilitation and Long-Term Care

Features of an Effective System of Post-Acute TBI Care

Conclusions

References

7 GAPS, CHALLENGES, AND OPPORTUNITIES

Gaps and Challenges in Current TBI Care and Research

Opportunities

Conclusions

References

8 ROADMAP AND RECOMMENDATIONS: CREATING AN OPTIMIZED SYSTEM FOR TBI

An Optimized System for TBI

Recommendations

A Research Agenda to Accelerate the Expansion of Knowledge

References

APPENDIXES

A HIGHLIGHTS OF SELECTED RECENT TBI RESEARCH EFFORTS

B BIOMARKER DEVELOPMENT FOR DIAGNOSIS, PROGNOSIS, AND MONITORING OF TRAUMATIC BRAIN INJURY

C INFORMATION SOURCES AND METHODS

D COMMITTEE MEMBER AND STAFF BIOGRAPHIES

E ACRONYMS AND ABBREVIATIONS

Boxes, Figures, and Tables

BOXES

S-1 Magnitude of the TBI Problem

S-2 A Roadmap for Achieving Progress in TBI Care and Research

S-3 Research Agenda to Accelerate the Expansion of Knowledge

1-1 Prior Reports on Injury Prevention and Trauma Care

1-2 Definition of TBI Used in This Report

1-3 Statement of Task

3-1 Advancing Equity in Health Care Systems: Applying Reflections and Recommendations from National Academies Consensus Studies and Workshops to TBI

4-1 Common Misconceptions About TBI

5-1 Selected Clinical Care Guidelines Addressing Prehospital and Hospital-Based Acute Care of TBI

6-1 Target Outcomes for Persons with TBI in the Immediate, Medium, and Long Terms

6-2 Selected Types of Care Facilities for Patients with TBI

6-3 Guidelines Informing Rehabilitation Care for TBI

6-4 Examples of Educational Materials and Resources on TBI

6-5 The Care Ecosystem Model

7-1 Features of VA Rehabilitation Services for TBI

FIGURES

1-1 Relationship between NIH disease-specific research funding and burden of disease for selected conditions

2-1 Estimated rates of TBI-related hospitalizations and deaths in the United States, by age group

2-2 Estimated age-adjusted rate of TBI-related hospitalizations, by sex and mechanism of injury, United States (2016 and 2017)

3-1 Illustrative stages of a person’s journey through recognition of, treatment for, and recovery after TBI

3-2 The BPSE prism

3-3 Conceptual depiction of how BPSE elements can affect the trajectory after a TBI and the role of an effective health care system

5-1 People who experience a TBI may follow different pathways for evaluation and potential care

5-2 Glasgow Coma Scale

TABLES

1-1 Examples of Physical, Cognitive, and Behavioral Challenges Experienced After TBI

1-2 Selected TBI Research Efforts

2-1 Estimated Rate of TBI-Related Hospitalizations and Deaths by Age Group in the United States (2014, 2016, and 2017)

2-2 Age-Adjusted Rates of Males and Females Among Major Unintentional and Intentional Principal Mechanisms That Contributed to a TBI-Related Hospitalization in the United States (2016 and 2017)

2-3 Department of Defense Numbers for TBI Among Service Members Worldwide

4-1 Example of Application of the Haddon Matrix: Brain Injuries Sustained during Baseball and Softball

4-2 Examples of Prevention Strategies for Common Causes of TBI in At-Risk Populations

8-1 Components of a Learning Health System and Their Implications for an Optimized TBI System