Improving Systems
of Follow-Up Care for
Traumatic Brain Injury

__________

Tamara Haag, Chanel Matney, and
Katherine Bowman, Rapporteurs

Forum on Traumatic Brain Injury

Board on Health Sciences Policy

Health and Medicine Division

Proceedings of a Workshop

NATIONAL ACADEMIES PRESS 500 Fifth Street, NW Washington, DC 20001

This activity was supported by contracts and grants between the National Academy of Sciences and Abbott Laboratories, AARP, Brain Scope Inc., Department of Defense (contract W81XWH22C0033), Department of Veterans Affairs (contract 36C24E22P0005), National Highway Traffic Safety Administration (order 693JJ922P000036), National Institute on Disability, Independent Living, and Rehabilitation Research (contract HHSP233201400020B, task order 75P00122F37113), National Institutes of Health (contract HHSN263201800029I, task order 75N98022F00001), Neurotrauma Sciences, American Academy of Nursing, American Academy of Physical Medicine and Rehabilitation, American Association of Neurological Surgeons, American College of Surgeons, American Physical Therapy Association, Brain Injury Association of America, Concussion Legacy Foundation, Elizabeth Dole Foundation, Emergency Nurses Association, National Association of Emergency Medical Technicians, National Association of State Head Injury Administrators, National College Athletic Association, National Institute for Health Care Management, and Wounded Warrior Project. Any opinions, findings, conclusions, or recommendations expressed in this publication do not necessarily reflect the views of any organization or agency that provided support for the project.

International Standard Book Number-13: 978-0-309-70826-5
International Standard Book Number-10: 0-309-70826-5
Digital Object Identifier: https://doi.org/10.17226/27205

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Suggested citation: National Academies of Sciences, Engineering, and Medicine. 2023. Improving systems of follow-up care for traumatic brain injury: Proceedings of a workshop. Washington, DC: The National Academies Press. https://doi.org/10.17226/27205.

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PLANNING COMMITTEE¹

MICHAEL MCCREA (Chair), Professor of Neurosurgery and Neurology and Director of Brain Injury Research, Medical College of Wisconsin JAVIER CÁRDENAS, Professor and Chief, Division of Sports Neurology, Rockefeller Neuroscience Institute, West Virginia University

JOHN CORRIGAN, Emeritus Professor, Department of Physical Medicine and Rehabilitation, The Ohio State University

KAREN HIRSCHMAN, Research Professor, School of Nursing, University of Pennsylvania

TOLU OYESANYA, Associate Professor, School of Nursing, Duke University

SETH SEABURY, Associate Professor of Ophthalmology and Director, Keck-Schaeffer Initiative for Population Health, University of Southern California

Health and Medicine Division Staff

KATHERINE BOWMAN, Senior Program Officer, Board on Health Sciences Policy

CHANEL MATNEY, Program Officer, Board on Health Sciences Policy

VICTORIA CHEGE, Senior Program Assistant (until June 2023)

CLARE STROUD, Senior Director, Board on Health Sciences Policy

Fellow

EMILY PACKARD DAWSON, Christine Mirzayan Science and Technology Policy Graduate Fellow, Board on Health Sciences Policy

Consultants

ANNA NICHOLSON, Founder and Lead Writer, Doxastic

TAMARA HAAG, Science Writer, Doxastic

__________________

¹ The National Academies of Sciences, Engineering, and Medicine’s planning committees are solely responsible for organizing the workshop, identifying topics, and choosing speakers. The responsibility for the published Proceedings of a Workshop rests with the workshop rapporteurs and the institution.

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FORUM ON TRAUMATIC BRAIN INJURY¹

DONALD BERWICK (Cochair), Institute for Healthcare Improvement

CORINNE PEEK-ASA (Cochair), University of California, San Diego

ALEXANDER BALBIR, Wounded Warrior Project

RACHAEL BARRETT, The Elizabeth Dole Foundation

JOE BONNER, Eunice Kennedy Shriver National Institute of Child Health and Human Development

MATTHEW BREIDING, Centers for Disease Control and Prevention

JAVIER CÁRDENAS, West Virginia University; representing the American Academy of Neurology

NANCY CHOCKLEY, National Institute for Health Care Management Foundation

JOHN CORRIGAN, The Ohio State University; representing the Brain Injury Association of America

RAMON DIAZ-ARRASTIA, University of Pennsylvania Perelman School of Medicine

E. WESLEY ELY, Vanderbilt University Medical Center

BRUCE EVANS, Upper Pine River Fire Protection District; representing the National Association of Emergency Medical Technicians

JONATHAN FISHER, American College of Emergency Physicians

STEVEN FLANAGAN, New York University Grossman School of Medicine; representing the American Academy of Physical Medicine and Rehabilitation

BRIAN HAINLINE, National Collegiate Athletic Association

ODETTE HARRIS, Stanford University School of Medicine and VA Palo Alto Health Care System

STUART HOFFMAN, Department of Veterans Affairs

RICHARD HODES, National Institute on Aging

FREDERICK KORLEY, University of Michigan

WALTER KOROSHETZ, National Institute of Neurological Disorders and Stroke

KATHY LEE, Department of Defense

RACHEL LAZARUS, AARP

D. CARL LONG, NeuroTrama Sciences, LLC

TARA JO MANAL, American Physical Therapy Association

GEOFFREY MANLEY, University of California, San Francisco and Zuckerberg San Francisco General Hospital

LUCA MARINELLI, GE Research

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¹ The National Academies of Sciences, Engineering, and Medicine’s forums and roundtables do not issue, review, or approve individual documents. The responsibility for the published Proceedings of a Workshop rests with the workshop rapporteurs and the institution.

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

BETH MCQUISTON, Abbott Laboratories

CATE MILLER, National Institute on Disability, Independent Living, and Rehabilitation Research

CHRIS NOWINSKI, Concussion Legacy Foundation

KAREN O’CONNELL, Northern Kentucky University School of Nursing; representing the Emergency Nurses Association

TESSIE OCTOBER, Eunice Kennedy Shriver National Institute of Child Health and Human Development

DAVID OKONKWO, University of Pittsburgh School of Medicine

TOLU OYESANYA, Duke University School of Nursing

MAYUR B. PATEL, Vanderbilt University Medical Center; representing the American College of Surgeons Committee on Trauma

LESLIE PRICHEP, BrainScope Company, Inc.

TERRY RAUCH, Department of Defense

JOEL SCHOLTEN, Department of Veterans Affairs

SHELLY TIMMONS, Indiana University School of Medicine; representing the American Association of Neurological Surgeons

GAMUNU WIJETUNGE, National Highway Traffic Safety Administration

REBECCAH WOLFKIEL, National Association of State Head Injury Administrators

KRISTINE YAFFE, University of California, San Francisco

Forum Staff

KATHERINE BOWMAN, Forum Director

CHANEL MATNEY, Program Officer

VICTORIA CHEGE, Senior Program Assistant (until June 2023)

CHRISTIE BELL, Finance Business Partner

CLARE STROUD, Senior Director, Board on Health Sciences Policy

Reviewers

This Proceedings of a Workshop 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 proceedings as sound as possible and to ensure that it meets the institutional standards for quality, objectivity, evidence, and responsiveness to the charge. The review comments and draft manuscript remain confidential to protect the integrity of the process.

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

Although the reviewers listed above provided many constructive comments and suggestions, they were not asked to endorse the content of the proceedings, nor did they see the final draft before its release. The review of this proceedings was overseen by LESLIE Z. BENET, University of California, San Francisco. He was responsible for making certain that an independent examination of this proceedings was carried out in accordance with standards of the National Academies and that all review comments were carefully considered. Responsibility for the final content rests entirely with the rapporteurs and the National Academies. We also thank staff member ALEXANDRA BEATTY for reading and providing helpful comments on this manuscript.

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Contents

ACRONYMS AND ABBREVIATIONS

1 INTRODUCTION

Workshop Objectives

Organization of the Proceedings of the Workshop

2 ACTION COLLABORATIVE ON TRAUMATIC BRAIN INJURY CARE

Introduction to the Action Collaborative on TBI Care

Reflections from Action Collaborative Working Groups

Discussion

3 ELEMENTS OF A SYSTEM OF FOLLOW-UP CARE FOR MILD TBI

Key Components of Transitional Care

Elements for Discharge Planning and Transitional Care

Examples of Follow-Up Care Models After Mild TBI

Discussion

4 ACHIEVING EFFECTIVE FOLLOW-UP CARE SYSTEMS DURING THE INITIAL YEAR POSTINJURY

Addressing Social Determinants of Health that Affect TBI Recovery

Fundamentals of Trauma-Informed Care for Vulnerable Populations

Designing and Accessing Appropriate Community Services

Alabama TBI System of Care

Discussion

5 IMPROVEMENTS TO SYSTEMS OF FOLLOW-UP CARE: PERSPECTIVES ON THE ROLES OF CERTIFICATION, REIMBURSEMENT, AND INFORMATION MANAGEMENT SYSTEMS

Applying Lessons from Stroke Center Certification to TBI Care

The Role of Financial Incentives in TBI Follow-Up Care

The Role of Technology in Optimizing TBI Follow-Up Care

Discussion

6 INTEGRATING INSIGHTS TO CATALYZE CHANGE

TBI Data Gaps

Academic and Community Partnerships in Change Efforts

Approaches to Building Comprehensive TBI Care

Trauma and Equity Considerations

TBI Discharge Instructions

Rehabilitation Considerations

Artificial Intelligence Considerations

Workshop Wrap-Up

APPENDIXES

A References

B Workshop Statement of Task and Agenda

C Speaker and Moderator Biographies

Boxes and Figures

BOXES

1-1 Recommendations of the Committee on Accelerating Progress in Traumatic Brain Injury Research and Care

3-1 Components of Transitional Care for TBI

4-1 CARE Approach: Brain-Injury-Informed Framework for Trauma-Informed Care

5-1 Applying Lessons from Stroke Center Certification to TBI Care

5-2 Patient Experience Optimization Module

FIGURES

2-1 Multidimensional goals of TBI follow-up care

3-1 Conceptualization of the transitional care model

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Acronyms and Abbreviations