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Introduction¹

Traumatic brain injury (TBI) is a condition that affects more than 5 million Americans and 60 million people worldwide each year; its prevalence is highest among the youngest and oldest members of society and in military and athlete populations. Despite this burden, TBI received little public awareness or funding in comparison with other neurological disorders until recent decades. More than 80 percent of TBIs are classified as “mild”—as determined by Glasgow Coma Scale scores of 13–15—yet these injuries can have acute and chronic effects on the injured individual’s functioning and on the patient’s family members and caregivers. Indeed, more than 50 percent of patients diagnosed with mild TBI have functional impairments 1 year postinjury (Nelson et al., 2019). Moreover, there continue to be critical gaps in TBI treatment. For instance, less than half of patients treated at Level 1 trauma centers for mild TBI receive any follow-up care after hospital discharge (Seabury et al., 2018). Greater awareness of TBI within the U.S. military and sporting communities in the last 10–20 years has illuminated the need for advances in TBI diagnosis and management more broadly.

Michael McCrea, a professor of neurosurgery and neurology and director of Brain Injury Research at the Medical College of Wisconsin, and chair

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¹ The planning committee’s role was limited to planning the workshop, and the Proceedings of a Workshop has been prepared by the workshop rapporteurs as a factual summary of what occurred at the workshop. Statements, recommendations, and opinions expressed are those of individual presenters and participants and are not necessarily endorsed or verified by the National Academies of Sciences, Engineering, and Medicine, and they should not be construed as reflecting any group consensus.

of the planning committee, opened the workshop by highlighting needs and opportunities in TBI prevention, care, and research as well as recent engagement by the National Academies of Sciences, Engineering, and Medicine (the National Academies) in drawing attention to these issues. In 2020, the Combat Casualty Care Research Program of the Department of Defense requested that the National Academies convene an ad hoc committee of experts to explore strategies to advance TBI care and research and develop a road map to accelerate progress. The resulting report provided findings and recommendations for areas in which progress can be made (Bowman et al., 2022; NASEM, 2022), and McCrea outlined the eight recommendations it sets forth (see Box 1-1).

Oftentimes, a TBI is not an isolated acute event, but rather a condition influenced by biological, psychological, social, and ecological factors that can have long-term effects. A primary theme that emerged during the National Academies study is the frequent failure of TBI care in the United States to fully meet the needs of affected individuals, families, and communities (NASEM, 2022). The United States lacks a comprehensive framework for addressing TBI along the full continuum of care and across care settings, the report said, and effective TBI systems of care need to be able to

anticipate, respond, and evolve in a coordinated fashion. Building on that report and other efforts, in 2022 the National Academies established the Forum on Traumatic Brain Injury as an ongoing mechanism for experts and stakeholders in the public and private sectors to undertake short- and long-term strategic discussions, address emerging issues for advancing TBI research and care, and explore opportunities for collective action. McCrea noted that the forum thus provides a venue to help advance the recommendations from the 2022 report as well as other areas of interest to the TBI community.

WORKSHOP OBJECTIVES

As McCrea emphasized, fulfilling the report’s second recommendation—integrating acute and long-term person- and family-centered management of TBI—will require closing current gaps in the provision of reliable and timely access to integrated, multidisciplinary, and specialized care for TBI. To help explore these gaps and the strategies for addressing them, the Forum on Traumatic Brain Injury hosted a 1-day public workshop—Improving Systems of Follow-Up Care for Traumatic Brain Injury—to examine the needs, practices, and models for systems of follow-up care and symptom management for individuals affected by TBI, with a focus on applicability to milder injuries along the TBI severity spectrum and on care needs in the initial months after injury (sometimes also referred to as the “postacute” period).

The workshop, which was held virtually and in person on May 9, 2023, featured invited presentations and discussions to explore:

• patient and community priorities for TBI follow-up care;
• key elements that support effective follow-up, symptom management, and recovery after TBI;
• lessons from models of TBI follow-up care programs and from programs addressing other conditions, such as stroke; and
• the feasibility, scalability, adaptability, and sustainability of systems of follow-up care for TBI.

Civilian patients with mild TBI were a primary focus of the workshop, given that over 80 percent of diagnosed TBIs are classified as “mild” and many affected individuals receive no follow-up medical care after leaving a setting such as an emergency department. Sessions during the workshop explored how to enhance the continuity of care after TBI and explored examples of multidisciplinary care models, including lessons from the creation of a system of primary and comprehensive centers for treatment of stroke. The value of understanding and embracing the patient perspective

was emphasized by a number of speakers and participants throughout the workshop. Multiple speakers also highlighted the effects of social determinants of health on TBI treatment, outcomes, and recovery and the need to incorporate such considerations when designing TBI care systems. Other topics presented included the ability to use technology and innovation to maximize patient connectivity to care while decreasing the burden on the health care system, the importance of scaling and sustainability for followup care models, and the importance of building a learning health care system in TBI to support ongoing improvement. A learning health system is one able to anticipate, respond, and learn in a coordinated fashion, in which “science, informatics, incentives, and culture are aligned for continuous improvement, innovation, and equity—with best practices and discovery seamlessly embedded in the delivery process, with individuals and families as active participants in all elements, and new knowledge generated as an integral by-product of the delivery experience.” In such a system, “evidence informs practice and practice informs evidence” (IOM, 2007).²

ORGANIZATION OF THE PROCEEDINGS OF THE WORKSHOP

This proceedings summarizes the presentations and discussions from the workshop on Improving Systems of Follow-Up Care for Traumatic Brain Injury. Following Chapter 1 introducing gaps in follow-up care for TBI and the motivation for this workshop, Chapter 2 outlines the goals and activities of the forum’s Action Collaborative on TBI Care and its working groups, including input from focus groups of TBI survivors who described challenges during the TBI recovery process and shared insights on improving care systems. The Action Collaborative represents a starting point among the forum’s members by which post-TBI needs are addressed, and this workshop will also inform future Action Collaborative and TBI forum thinking on these issues. Chapter 3 explores necessary and vital components of systems of follow-up care for TBI and describes several models addressing care continuity and providing multidisciplinary post-TBI care to illustrate elements of success and lessons learned. Chapter 4 examines key considerations beyond the clinic for achieving more effective TBI care and recovery, including the importance of social determinants of health, partnerships with community organizations, and the intersection of trauma and TBI. Chapter 5 highlights several strategies and opportunities for improving systems of follow-up care for TBI, focusing on the roles

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² See also the National Academy of Medicine’s Learning Health System Series at https://nam.edu/programs/value-science-driven-health-care/learning-health-system-series (accessed August 25, 2023).

of program certification, financial incentives, and information management systems. Chapter 6 summarizes a concluding discussion integrating insights from the workshop into change efforts. Appendix A contains the reference list. See Appendix B for the workshop statement of task and agenda and Appendix C for brief biographies of speakers and planning committee members.

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