Examining Traumatic Brain Injury as a Chronic Condition: Proceedings of a Workshop (2025)

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4 Considering Opportunities to Advance Research and Improve Care and Services Key Points Highlighted by Individual Speakers • Traumatic brain injury (TBI) is a dynamic, chronic condi- tion affecting millions in the United States, yet care systems remain fragmented and underdeveloped. Simply recognizing TBI as chronic is not enough—what is needed is the creation of integrated care pathways, enhanced community engagement, expanded research, and long-term, patient-centered care strate- gies (Corrigna, Dettmer, Juengst, Perlman). • A paradigm shift is underway in TBI care, moving from epi- sodic, acute-care-focused models to a comprehensive, life- long framework that addresses evolving needs over time. Current systems offer reactive and short-term services rather than the proactive, sustained care TBI requires (Hammond, Nakase-Richardsonmond). • Chronic care frameworks tailored to TBI that incorporate edu- cation, risk-based care, caregiver involvement, and attention to social determinants of health are needed. Effective models also support self-management, community integration, and independence beyond traditional medical settings (Hammond, Moriarty, Talley). continued 67 PREPUBLICATION COPY—Uncorrected Proofs 

68 EXAMINING TBI AS A CHRONIC CONDITION • Systemic transformation of TBI care will require coordinated investment in research, education, and digital innovation, alongside partnerships across health care, academia, govern- ment, and community organizations to develop and implement scalable solutions. Standardized screening, resource facilita- tion, and integration across health care and community plat- forms will also be essential (Corrigan, Dettmer). • Federal policy action to establish infrastructure for long-term TBI care, support reimbursement, and expand provider educa- tion is needed (Corrigan, Dettmer, Juengst, Perlman). • Outcome metrics that blend traditional clinical indicators with stakeholder priorities such as employment, recidivism, and quality of life will better align outcomes with personal goals and help demonstrate both economic return and positive soci- etal impact (Corrigan, Dettmer, Juengst, Perlman). • Approaches to other chronic conditions offer lessons for TBI system transformation. Approaches used to address HIV, stroke, and developmental disabilities highlight the power of early intervention, community-based models, and wraparound supports (Hammond, Juengst, Spier). • There is an urgent need to expand TBI research beyond the acute phase to understand long-term outcomes, develop chronic-phase biomarkers, and personalize treatment strate- gies (Diaz-Arrastia, Hoffman, Loane, Sander, Wagner). • Molecular, immune, and imaging biomarkers offer opportuni- ties to improve TBI diagnosis, prognosis, and treatment per- sonalization, particularly when integrated with implementation science and rehabilitation research (Diaz-Arrastia, Hoffman, Loane, Sander, Wagner). • Improving data infrastructure, including better epidemiologic surveillance and using existing longitudinal databases, is essen- tial for understanding the full spectrum of TBI and ensur- ing equitable access to care (Diaz-Arrastia, Hoffman, Loane, Wagner). • Collaboration across disciplines, systems, and communities, including people with lived experience, is vital to developing meaningful outcomes, optimizing interventions, and ensuring research reflects real-world needs (Diaz-Arrastia, Hoffman, Moriarty, Sander, Wagner). PREPUBLICATION COPY—Uncorrected Proofs 

CONSIDERING OPPORTUNITIES 69 • TBI must be addressed as a chronic, multifactorial condition through scalable, community-driven approaches, informed by translational research and reinforced by policy and payer engagement (Diaz-Arrastia, Hoffman, Loane, Sander). NOTE: This list is the rapporteurs’ summary of points made by the individual speakers identified, and the statements have not been endorsed or verified by the National Academies of Sciences, Engineering, and Medicine. They are not intended to reflect a consensus among workshop participants. The final three sessions of the workshop explored opportunities to improve care and advance research for individuals living with traumatic brain injury (TBI) as a chronic condition. THE USE OF CHRONIC CARE MODELS FOR TBI The first of these sessions discussed chronic care models and how they might be adapted to meet the lifelong needs of people and families deal- ing with the effects of TBI. Such models aim to integrate clinical support, rehabilitation, and community reintegration in a more coordinated and patient-centered way. The session was introduced and moderated by Risa Nakase-Richard- son, chief of research at the James A. Haley Veterans Hospital and professor and director of TBI clinical research in the Department of Neurosurgery, Morsani College of Medicine, at the University of South Florida. Nakase- Richardson emphasized the importance of care models that are tailored to the unique and evolving needs of people with TBI. Conventional, short- term care often fails to address the scope of ongoing challenges, she said, calling on the session’s speakers to discuss approaches that provide support across various stages of recovery and over a person’s life course. Chronic Care Models for Sustainable, Person- Centered TBI Care and Support Flora Hammond, principal investigator for the Indiana TBI Model System and chair of physical medicine and rehabilitation at the Indiana University School of Medicine, opened the session by describing the cur- rent system of TBI care as a “half-built bridge.” Although substantial services are often provided early after injury, she explained, care becomes reactive, fragmented, and insufficient in the years that follow. Many indi- viduals with TBI face limited access to specialized providers, brief and inconsistent follow-ups, and little support for caregivers or navigation of PREPUBLICATION COPY—Uncorrected Proofs 

70 EXAMINING TBI AS A CHRONIC CONDITION long-term rehabilitation services, she described. Hammond emphasized that this patchwork system fails to meet the needs of people living with TBI as a lifelong condition, and lacks attention to important aspects such as social determinants of health, community integration, and care coordination. Applying Chronic Disease Frameworks to TBI Hammond discussed adapting chronic disease management frameworks to TBI, drawing from models used in managing other long-term conditions. She highlighted three models: chronic disease management (emphasizing screening, monitoring, and education), collaborative care (a team-based model involving a care manager and specialist), and the Chronic Care Model (CCM) first developed by Edward Wagner and colleagues, which incorporates systems-level changes and community engagement (Oxman et al., 2002; Wagner, 1999). Hammond noted that such models are used for addressing other long-term conditions including diabetes, hyperten- sion, asthma, and renal disease and that they have demonstrated success in reducing health care use and improving outcomes. These models offer a promising road map for addressing the chronic and dynamic nature of TBI, she argued, which she defined in Box 4-1. Evidence Supporting Chronic Care Approaches for TBI Hammond cited research on the applicability of chronic care models in TBI contexts. A randomized controlled trial by Hoffman et al. (2024) involving 158 individuals with TBI and chronic pain showed reductions in BOX 4-1 Defining Chronic TBI Hammond shared a case definition for chronic TBI used in the BeHealthy approach she described: “Chronic brain injury is a chronic condition manifested by the presence or persistence of recurring neurologic signs or symptoms follow- ing an injury to the brain. Motor, sensory, cognitive, emotional, behavioral, func- tion and/or social effects may persist for an extended period, often more than 6 months, or recur or emerge over a person’s lifetime.” Every TBI does not require chronic condition management, she emphasized. Not all brain injuries become chronic, nor are all postinjury issues necessarily caused by the brain injury. For those who do experience significant longer-term consequences, responsive and person-centered management is important to improve outcomes, she said. Source: Hammond presentation; BeHealthy. PREPUBLICATION COPY—Uncorrected Proofs 

CONSIDERING OPPORTUNITIES 71 pain interference after participation in a collaborative care program that was sustained at 8-month follow-up visits. Another study by Trexler and Parrott (2022) found reduced recidivism rates at 6 and 12 months among individuals with TBI released from correctional facilities who participated in a resource facilitation program. These findings reinforce the value of care coordination, long-term follow-up, and individualized support in improv- ing outcomes for individuals with chronic brain injury, she said. Hammond highlighted the Chronic Care Model as one of the most comprehensive approaches available (Wagner, 1999). This model includes six elements: 1. delivery system design, 2. decision support, 3. clinical information systems, 4. self-management support, 5. supportive community environment, and 6. public policy integration. A review by Kroenke et al. (2024) found that the Chronic Care Model outperforms collaborative care and traditional care models in terms of qual- ity of life, disease-specific outcomes, health care cost-efficiency, and patient health knowledge (see Figure 4-1). Hammond noted, however, that many health care settings implement only a subset of elements from the model, primarily self-management (46 percent), delivery system (23 percent), and decision support (21 percent) (Reynolds et al., 2018). FIGURE 4-1 Effectiveness of care models in chronic disease management. NOTE: CCM = Chronic Care Model. SOURCE: Presented by Flora Hammond, March 12, 2025. From Kroenke et al., 2024. PREPUBLICATION COPY—Uncorrected Proofs 

72 EXAMINING TBI AS A CHRONIC CONDITION Introducing the BeHealthy Model for TBI Hammond introduced the BeHealthy model for chronic care man- agement, which was specifically designed for chronic brain injury and developed in collaboration with the TBI Model Systems and funded by the National Institute on Disability, Independent Living, and Rehabilita- tion Research.1 BeHealthy is rooted in four principles: proactive providers, informed and supported individuals and caregivers, engaged community partners, and person-centered, culturally humble care. It includes the fol- lowing nine core components focused on providing evidence-based TBI care and incorporating preventative brain health strategies: 1. Educate and support both patients and caregivers. 2. Identify and treat medical and psychological hazards. 3. Reduce potential iatrogenic harm. 4. Prescribe appropriate treatments. 5. Facilitate social and intellectual engagement. 6. Encourage healthy brain behaviors. 7. Review for comorbid health conditions and medication. 8. Facilitate communication. 9. Evaluate community barriers and opportunities. This approach aims to ensure coordination among providers to manage comorbidities, while attending to the importance of lifestyle factors such as nutrition, physical activity, and restorative sleep, along with addressing social determinants of health to support recovery and long-term well-being. The model stratifies individuals by risk and complexity to determine appro- priate levels of support, Hammond said, recognizing that 70–80 percent of people with chronic conditions can be cared for through self-management. As risk and complexity increase, more intensive management is required, based on factors like medical complexity, self-management ability, and available community and social supports, with active case management for the highest-risk patients with severe complications (roughly 5 percent). Hammond concluded by highlighting the importance of sustainable funding and policy reform to support the use of chronic brain injury care models for TBI. She noted that fee-for-service reimbursement alone is inad- equate to maintain the multidisciplinary and longitudinal care required. Instead, Hammond argued for the incorporation of alternative mechanisms such as Medicaid waivers, value-based payment systems, accountable care organizations, and community partnerships. She called for further research, the development of training materials and implementation strategies, and 1 https://medicine.iu.edu/physiatry/research/behealthy (accessed July 18, 2025). PREPUBLICATION COPY—Uncorrected Proofs 

CONSIDERING OPPORTUNITIES 73 policy development to effectively integrate TBI into chronic care planning and delivery. Panel Discussion Nakase-Richardson invited panelists Judy Dettmer, director of technical assistance and special projects at the National Association of State Head Injury Administrators (NASHIA); Kelli Gary Talley, an assistant professor at Virginia Commonwealth University and a TBI survivor; Helene Mori- arty, a VA nurse scientist and professor at Villanova University; and Eric Spier, brain injury program medical director at Craig Hospital to reflect on effective care approaches and pathways to address the long-term effects of TBI. Reframing TBI as a Chronic Condition Dettmer expressed appreciation for the growing recognition of TBI as a chronic condition and emphasized using this momentum to enhance long-term care and support systems. Drawing from decades of experience with individuals living 30 to 40 years postinjury, she highlighted persistent, often overlooked challenges. Dettmer endorsed the BeHealthy model as a promising framework and called for aligning policy and funding efforts to support the widespread adoption of such care approaches. She described this moment as a potential turning point for advancing sustainable, person- centered systems for those living with chronic brain injury. The Role of Self-Management and Caregiver Support Talley reflected on her personal journey with brain injury, emphasizing the pivotal role of self-management and caregiver support in her recovery during a time when formal resources were scarce. She relied heavily on strategies she discovered independently, along with the critical support of her mother and sister. These approaches enabled her to successfully navigate her environment and achieve meaningful outcomes, underscoring the power of self-management when paired with a strong support system. Drawing on her experience in Virginia, she argued for empowering families and communities as essential pillars in managing brain injury. Enhancing TBI Care for Veterans and Families Moriarty discussed the alignment of the BeHealthy chronic care model with her work serving veterans with TBI and their families. She noted that one of the model’s strengths is its inclusion of both the person with TBI and PREPUBLICATION COPY—Uncorrected Proofs 

74 EXAMINING TBI AS A CHRONIC CONDITION their care partners, an approach that is often overlooked in research and intervention design. She also highlighted the model’s focus on the elicitation of individualized goals from the person with TBI and care partners, though she acknowledged the challenge of measuring such outcomes. Her team has developed tools to address this gap, she said, and she highlighted the importance of assessing social determinants of health, such as housing and financial stability. These factors are especially critical for many veterans, she said, who are at heightened risk for homelessness and financial dis- tress; a recent report noted that “35 percent of military/veteran caregiving households have incomes below 130 percent of the federal poverty level” (Ramchand et al., 2024, p.7). Moriarty added that screening for medical and psychiatric comorbidi- ties is another important feature of chronic care models for brain injury, noting her research in the Veterans In-home Program, where 45 percent of family caregivers of veterans with TBI reported clinically significant depres- sive symptoms (Moriarty, 2018). She called for extending mental health screening to caregivers and providing appropriate referrals to better support the broader ecosystem surrounding individuals with TBI. Implementing and Scaling Chronic Care Models for TBI The discussion explored how chronic care models can be more widely implemented to meet the long-term needs of individuals with TBI and their caregivers. Panelists emphasized that while models such as BeHealthy exist and provide structured approaches to chronic care, scaling them effectively will require systemwide resource allocation, technology integration, and recognition that TBI is not solely a medical condition—it also deeply affects behavioral health and community functioning. Talley and Dettmer called for a paradigm shift to more person-centered, neurologically informed care, especially across systems that may not traditionally address brain injury. Recognizing the Value of Community-Based Resources and Building Partnerships Moriarty drew attention to the lack of research on community-based resources in chronic care models and called for stronger emphasis in this area. Talley noted that incentives in academic institutions can favor high- profile research over mixed-methods or qualitative studies that are vital for understanding lived experiences. This disincentive can slow progress in areas like community-based research and practical implementation, she said, even though such studies could illuminate key gaps in postacute TBI care. She cited successful community collaborations in Virginia involving PREPUBLICATION COPY—Uncorrected Proofs 

CONSIDERING OPPORTUNITIES 75 health systems and brain injury organizations, although access remains limited because of wait lists. Moriarty recommended using existing frame- works such as the VA’s Whole Health Program, and Dettmer called for the inclusion of partners from housing, legal, and intimate partner violence services in broader TBI care strategies. Equipping Providers to Address TBI Holistically Panelists pointed out that simply labeling a person as having had a TBI is insufficient; providers need training to understand the diverse effects of brain injury, from cognitive to behavioral to emotional impairments, Dettmer, Talley, and Moriarty said. Dettmer emphasized the importance of equipping providers with context and practical strategies to treat individu- als with TBI. This is especially important in behavioral health, she said, where TBI is often misunderstood as purely medical. Talley and Moriarty noted the value of colocating behavioral health with primary care and improving care coordination. The discussion also highlighted the role of TBI education in health care training. Panelists described promising practices, including using standard- ized patients with a range of disabilities to help students learn and practice, and elective coursework on brain injury in medical, nursing, counseling, and occupational therapy programs. However, panelists called for more standardized and mandatory TBI content. Dettmer suggested looking to models among states and universities that have incorporated brain injury training in curricula, and she suggested a role for TBI “champions” within universities to help integrate such content across disciplines. Such integra- tion would ensure health care professionals across disciplines are better prepared to address the complex needs of individuals with chronic brain injury. Harnessing Technology in Chronic TBI Care The discussion turned to the role of innovation and technology in chronic TBI care. Hammond highlighted the potential of using technol- ogy to track symptoms, provide patient feedback, and build registries that prompt care teams about follow-ups. Dettmer shared efforts by NASHIA to develop digital tools like the Online Brain Injury Screening and Support System and a concussion navigator app,2 which offer real-time strategies and support for both patients and providers. Talley emphasized the impor- tance of investing in low-cost and assistive technology options to improve affordability and accessibility. 2 https://www.nashia.org/obisssprogram (accessed July 18, 2025). PREPUBLICATION COPY—Uncorrected Proofs 

76 EXAMINING TBI AS A CHRONIC CONDITION Case Management and Resource Facilitation Case management and resource facilitation were also identified as vital but underfunded aspects of TBI care. Moriarty and Dettmer emphasized that early and sustained relationships with case managers improve engage- ment and long-term outcomes. Resource facilitators are especially impor- tant for vulnerable populations, they said, such as those exiting the criminal justice system. Yet, resource facilitation is often not reimbursed. Nakase- Richardson called for more research to identify the “active ingredients” that produce the best outcomes for patients and families, information that will be important in raising awareness and encouraging funding for these roles. Strategies for Implementing and Sustaining Chronic Care Models for TBI The panel concluded by exploring strategies for implementing and sustaining chronic care models for TBI. Talley, Dettmer, and Moriarty underscored the need for comprehensive, inclusive approaches that not only acknowledge the chronic nature of brain injury but actively support those living with its lifelong effects. This includes knowledge translation, inclusive research partnerships, and advocacy at local and national levels as necessary to drive forward improvements in chronic brain injury care. Talley identified funding as a barrier and called for stronger partnerships with private-sector organizations. Dettmer noted that better data on the prevalence and effects of chronic TBI is needed to support policy and funding arguments. Moriarty highlighted the importance of incorporating caregiver perspectives through participatory research tools like Photovoice to better inform service design. NEAR-TERM OPPORTUNITIES TO IMPROVE CARE FOR TBI AS A CHRONIC CONDITION The next session built on gaps and challenges identified throughout the workshop to focus on near- to midterm actions to improve access to evidence-based care and services for individuals living with chronic brain injury and their families. It was introduced and moderated by Flora Hammond, professor and chair of physical medicine and rehabilitation at Indiana University School of Medicine. She was joined by panelists Owen Perlman, a founding partner of Associates in Physical Medicine & Rehabilitation, PC; John Corrigan, a professor of physical medicine and rehabilitation at the Ohio State University and director of the Ohio Valley Center for Brain Injury Prevention and Rehabilitation; Shannon Juengst, a clinical investigator at TIRR Memorial Hermann and adjunct associ- ate professor of physical medicine and rehabilitation at the University PREPUBLICATION COPY—Uncorrected Proofs 

CONSIDERING OPPORTUNITIES 77 of Texas; and Judy Dettmer, director of technical assistance and special projects at NASHIA. Reflecting on what she had heard during the workshop, Hammond highlighted the multifactorial and dynamic nature of TBI recovery. For those living with lasting effects, long-term multidisciplinary care tailored to individual needs leads to better functional outcomes, she said. Formal recognition of TBI as a chronic condition could lead to improved provider awareness, better insurance coverage, and more systematic data collec- tion, she said. However, presentations and discussion during the workshop identified significant gaps in the current system, including limited and fragmented access to community-based services, lack of screening for long- term effects, and insufficient care for co-occurring conditions. Hammond also noted two areas that could benefit from deeper attention: addressing the transition from pediatric to adult care, and providing services and sup- ports to populations that experience high rates of TBI, such as survivors of intimate partner violence. Panel Discussion Panelists also reflected on key insights from the workshop, including priorities for improving care and services for people with chronic TBI. Legislative and Policy Action Perlman opened with a call to reauthorize the TBI Act, which expired in 2024 and to pass national brain injury legislation. These efforts sustain TBI infrastructure and support research, care, and education for TBI nation- wide, he said. He emphasized the multifaceted nature of TBI—affecting physical, cognitive, emotional, behavioral, and legal aspects—and advo- cated for policy reforms within federal health care strategy and electronic medical record systems. He also called for continued action on the eight recommendations in the National Academies’ report Traumatic Brain Injury: A Roadmap for Accelerating Progress to advance care and research (NASEM, 2022). Improving Care Transitions and Promoting Technology Integration Perlman also emphasized the importance of improved care transitions to improve long-term outcomes, proposing standardized tools for screen- ing symptoms, better referral systems postdischarge, and the use of nurse navigators or case managers, especially for high-risk individuals. He high- lighted Michigan’s no-fault insurance model in supporting long-term case management and urged for broader application of such strategies. He PREPUBLICATION COPY—Uncorrected Proofs 

78 EXAMINING TBI AS A CHRONIC CONDITION recommended creating a national symptom checklist for use at discharge from emergency or inpatient care to ensure consistent tracking of the full range of TBI-related symptoms. He also called for integrating technology not only to enhance communication but to protect vulnerable individuals online and support independent functioning. Navigating Fragmented Systems and Expanding Multidisciplinary Teams Juengst echoed these points and emphasized the disproportionate bur- den often placed on individuals with TBI and their families to navigate fragmented systems. While the health care infrastructure remains underde- veloped, a shift toward a life span model of care is gaining momentum, she said. She cited Maine’s reimbursement for community health workers as a promising model for reaching underserved and rural populations where medical mistrust or geographic isolation may otherwise reduce engagement with health care services. Case management and resource facilitation are needed across the full continuum of recovery, Juengst continued, and not just during the early postinjury phase. Life care planners, case managers, and facilitators can help individuals and families navigate evolving needs and connect to long-term resources, especially as individuals move beyond acute or formal medical systems. Juengst emphasized the value of expanding multidisciplinary care teams to meet the broad needs of people with TBI, including not just traditional medical providers, but also social workers, rehabilitation counselors, peer supporters, community health workers, educators, and technology indus- try partners. These expanded teams are key to addressing the broader behavioral and social needs of people with TBI and ensuring coordinated, community-integrated care. Opportunities for Systemic Improvement and for Embedding TBI Awareness in Standards and Practices Dettmer outlined four opportunities for improving TBI care: expanding screening, increasing education across systems, building resource facilita- tion capacity, and leveraging existing policies for system-wide recognition of brain injury. She emphasized the role of screening not just for identify- ing TBI and improving data collection, but for guiding ongoing medical monitoring, especially in the context of emerging chronic conditions such as vascular disease. She repeated that without proper education, many sys- tems, such as criminal justice, homelessness services, and disability support, fail to recognize and accommodate brain injury. Dettmer championed brain-injury-informed care and the importance of guidelines embedding TBI awareness into practice standards. On resource PREPUBLICATION COPY—Uncorrected Proofs 

CONSIDERING OPPORTUNITIES 79 facilitation, she shared that NASHIA recently completed a national consen- sus process to define best practices in this area. Because states implement resource facilitation in widely varying ways—largely owing to funding constraints—she called for both increased financial support and for the use of standardized implementation tools. NASHIA is currently developing an implementation guide to promote consistency and quality across programs, she said. Finally, she highlighted the importance of making good use of existing policy precedents, such as CMS’s designation of brain injury as a chronic condition under Chronic Condition Special Needs Plans. Although such changes may seem incremental, they provide powerful leverage for broader systemwide changes, she said. Scaling Resource Facilitation and Supporting Self-Management Corrigan reflected on the substantial gap between the size and com- plexity of the TBI population and the levels of services currently available, emphasizing the need to leverage existing service systems by embedding brain-injury-informed care into mainstream health and community services. He described resource facilitation as a cost-effective, scalable solution that should be expanded nationally. He also highlighted self-management as an indispensable part of TBI care, supported by tools and technology that empower individuals and families to lead their recovery journey. A recurring theme from Corrigan and other speakers during the workshops was the importance of both self-management and person- centered care. Engagement must be driven by the individual’s own goals, rather than a provider’s, and numerous protocols exist to operationalize person-centered approaches, he said. He emphasized the need for these approaches to be applied across health care and community systems to support this shift. Defining Value Across Systems and Audiences Several panelists highlighted the role of combining quantitative findings and lived experiences in making a compelling case for investment in long- term TBI care and reform. In discussing how to demonstrate value to payers and others, Corrigan and Perlman noted that economic return on invest- ment (ROI) data, such as reduced hospitalizations, improved medication adherence, and community reintegration, will need to be collected. They also acknowledged that what constitutes evidence depends on the audience. For example, Dettmer noted that recidivism may be the key metric for jus- tice systems, while job retention matters in vocational rehabilitation. The panelists emphasized flexibility in outcome measures and the importance of translating data into meaningful language for each system. PREPUBLICATION COPY—Uncorrected Proofs 

80 EXAMINING TBI AS A CHRONIC CONDITION CDC’s Role in TBI Surveillance and Recognition When asked about the role of the Centers for Disease Control and Prevention (CDC), Corrigan emphasized the importance of expanded sur- veillance data and broader public recognition of TBI as a chronic condition. Inclusion of TBI in chronic disease frameworks can help raise aware- ness, open funding pathways, and improve guidance for primary care and behavioral health providers, the panelists said. Dettmer agreed and called for moving beyond the narrow lens of sports concussions and capturing comprehensive prevalence data across all ages and causes. Workforce Training Hammond asked about workforce training to better prepare health care professionals for managing chronic TBI symptoms. Panelist responses highlighted the importance of integrating TBI content into education across disciplines including medical, nursing, and social work, as well as standardized testing, and they identified potential opportunities. Juengst noted existing efforts like university training courses and continuing edu- cation for rehabilitation counselors, emphasizing the need for both foun- dational and ongoing training. Corrigan shared Ohio State University’s experience incorporating brain injury modules into social work curricula, noting that early exposure during formal education tends to be more effective than later in-service training. He also mentioned ongoing efforts to introduce similar content in nursing and medical education, though he acknowledged the difficulty of integrating chronic TBI topics into estab- lished curricula. Perlman supported these points and suggested involving profession- als such as human resources personnel and counselors more deeply in TBI-related awareness. Dettmer proposed embedding brain injury consid- erations into broader practice standards and guidelines, referencing legisla- tion such as the TBI PTSD Law Enforcement Education Act as a potential driver for wider inclusion in training programs, even in the absence of direct funding. Enhancing Early Prognosis, Cross-Sector Collaboration, and Learning from Other Chronic Conditions The panelists highlighted that implementing chronic care models for TBI will require collaboration across sectors, sustained investment, and commitment to person-centered practice. The conversation turned to PREPUBLICATION COPY—Uncorrected Proofs 

CONSIDERING OPPORTUNITIES 81 opportunities to draw lessons from care models for other chronic condi- tions. Lessons from HIV and developmental disabilities, both of which use community-driven, lifelong care models, were cited by Juengst and Dettmer as valuable blueprints for TBI. Spier identified the importance of ensuring early prognosis and guid- ance from neurology and trauma teams as essential to set realistic care trajectories. He emphasized that while rehabilitation experts have devel- oped strong recommendations for managing disorders of consciousness and concussions as chronic conditions, these are often not implemented early enough in patient care. Neurologists, trauma care providers, and neurosurgeons in acute settings such as the ICU and NICU frequently fail to apply frameworks that support long-term recovery, he said, and improved early-stage prognosis and education are needed to inform care guidelines and promote better outcomes. NEAR-TERM OPPORTUNITIES TO ADVANCE RESEARCH ON TBI AS A CHRONIC CONDITION The final session sought to identify practical, highly effective strate- gies to swiftly advance care and understanding of TBI as a chronic condi- tion, reinforcing the workshop’s overarching aim of turning research into meaningful actions that improve long-term outcomes for those affected. It was introduced and moderated by Ramon Diaz-Arrastia, professor of neu- rology and director of the Clinical TBI Research Center at the University of Pennsylvania. He was joined by panelists Angelle Sander, director of TIRR Memorial Hermann’s Brain Injury Research Center and professor of physical medicine and rehabilitation at Baylor College of Medicine; David Loane, associate professor of neuroscience at Trinity College, Dublin, and adjunct associate professor at the University of Maryland School of Medicine, Baltimore; and Jeanne Hoffman, professor in the Department of Rehabilitation Medicine at the University of Washington School of Medicine. Diaz-Arrastia opened by highlighting the remarkable research progress made in the past 10 to 15 years, particularly in the acute phase of TBI. However, he emphasized that these advances have yet to be fully translated into the postacute and chronic stages, and the session’s objective was to explore how to use existing knowledge to close this gap. The discussion centered on identifying near-term research actions in areas such as epide- miology, basic science, diagnostics, treatment, and prevention to better understand and address TBI as a chronic condition. PREPUBLICATION COPY—Uncorrected Proofs 

82 EXAMINING TBI AS A CHRONIC CONDITION Panel Discussion Opportunities and Priorities in TBI Research: Biomarkers, Long-Term Outcomes, and Inclusive Data Strategies The panel began with a discussion on “low-hanging fruit” in TBI research, including areas where progress is most feasible in the short term. Sander emphasized the importance of studying long-term outcomes and how early environmental and social factors shape recovery trajectories. She argued for the inclusion of such variables in large databases and the devel- opment of interdisciplinary research that spans from trauma care to chronic follow-up. Loane highlighted how biomarker science has advanced, with a particular opportunity to implement neurodegenerative and immune-based biomarkers to identify subgroups for tailored interventions. Loane pointed to the success of biomarker-guided, experimental medi- cine trials in the UK and suggested that similar approaches should be adopted in the United States. He emphasized the clinical utility of blood- based and imaging biomarkers, including those measuring inflammation, neuronal injury, and immune system dysfunction, to guide treatment deci- sions and improve prognostication. Hoffman added that understanding biological variability in treatment response, including differences in how people develop or recover from chronic TBI symptoms, is key to modifying and testing behavioral and medical interventions. The panel noted a critical need to bridge biomarker research with real-world patient experiences. Hoffman argued for more mixed-methods research to understand why interventions fail or succeed in diverse popula- tions. She emphasized testing intervention modifications for chronic TBI- related conditions like depression, epilepsy, and cardiovascular disease, rather than assuming treatments from other populations will generalize. This was echoed by Diaz-Arrastia, who cautioned against directly applying dementia therapies to TBI patients without specific research. Epidemiological data was another focus. Diaz-Arrastia asked how ongoing large-scale studies could better include TBI populations. Hoffman supported using datasets such as the Atherosclerosis Risk in Communities (ARIC) studies dataset and veteran databases but cautioned that these often lack the depth to capture TBI variability. Adding TBI-specific data elements to general longitudinal studies would be valuable, she said. Loane suggested examining bidirectional health effects, such as how infections or immune dysfunction may interact with TBI and shape outcomes. Expanding Biomarker Applications for Long-Term TBI Management The conversation returned to biomarkers for TBI. Diaz-Arrastia and others noted that most biomarker research has focused on the acute and PREPUBLICATION COPY—Uncorrected Proofs 

CONSIDERING OPPORTUNITIES 83 early subacute phases after TBI, even though TBI’s effects unfold over years. They emphasized the need for biomarkers that can guide long-term care, similar to how imaging and molecular biomarkers have transformed other areas of clinical neuroscience. Loane noted the promise of CNS-specific exosome biomarkers, autoimmune markers, and chronic inflammatory markers such as IL-6. Sander proposed exploring how biomarkers might predict responses to behavioral or environmental stressors, which could enhance clinical decision making in chronic care. Wagner suggested integrating biomarkers into clinical workflows and digital tools, including wearables and provider portals, to give near-real-time feedback on physiological states such as stress and recovery. This could bridge the gap between biology and self- management, supporting more personalized chronic care, she said. Bridging Biomarkers and Rehabilitation Therapies Panelists also considered the intersection of biomarker-guided approaches with rehabilitation therapy outcomes. Diaz-Arrastia and Hoff- man suggested that biomarker-guided studies could help justify coverage and refine dosage for services such as physical therapy and cognitive reha- bilitation. Loane noted that rehabilitation therapies may work through different biological mechanisms, depending on timing. For example, early interventions may focus on suppressing degeneration, while later therapies may promote growth and repair. He suggested that biomarkers could guide when to transition from pharmacological to physical or behavioral treat- ments—an idea supported by preclinical data. Looking ahead, Diaz-Arras- tia envisioned a future in which clinicians could order blood and imaging tests after TBI just as they do for stroke or multiple sclerosis, enabling tailored prognoses and treatments. However, Diaz-Arrastia and others stated how important it was that advances be shared fairly. Hoffman emphasized that access to rehabilita- tion still depends heavily on insurance and location, which skews the data and understanding of effectiveness. She called for greater research that includes people who did not access traditional care and for efforts to enable underserved populations to access therapies. Wagner and others echoed the need for scientific progress to drive better access and reduce treatment and outcome disparities. Interdisciplinary and Community-Engaged TBI Research Sander underscored the importance of interdisciplinary collaboration, noting that no single domain can address the complexity of TBI. She advo- cated for integrating behavioral health, neuroscience, community health, and rehabilitation expertise to improve care. Hoffman added that embracing PREPUBLICATION COPY—Uncorrected Proofs 

84 EXAMINING TBI AS A CHRONIC CONDITION complexity should not overwhelm researchers; instead, it should push them toward more collaborative, community-informed research design. Community involvement was another key theme. Hoffman argued that research priorities often differ between clinicians and individuals with lived experience. She described community-based participatory research as essential for aligning scientific goals with real-world needs. Diaz-Arrastia agreed, noting that TBI care must be shaped by people’s experiences and informed by personal narratives as well as data. Enhancing TBI Research and Care Through Data Integration Wagner added that clinical adjudication strategies and electronic medi- cal record integration, including the use of natural language processing, could improve patient identification and tracking. She also called for closer collaboration between translational and clinical scientists to reflect the heterogeneity of TBI in experimental models. This reverse translational pipeline could refine animal models to better match human subtypes and improve trial success, she said. Charting the Future of TBI Care: Collaboration, Equity, and Momentum The panel closed by acknowledging that while there is still much to learn, TBI research is accelerating, and there is significant momentum toward long-term, biologically informed, person-centered care. Diaz-Arras- tia, Sander, Loane, and Hoffman agreed that collaboration, equity, and innovation are central to sustaining this progress. The panelists expressed optimism that by aligning research, policy, and clinical care, the field can meaningfully improve outcomes for people living with TBI. FINAL REMARKS Harris concluded the workshop by revisiting its primary objectives and expressing appreciation for the contributions of speakers, panelists, moderators, planning committee members, and the engaged audience. She underscored that the central aim—called for as part of the Traumatic Brain Injury Reauthorization Act of 2024—was to evaluate evidence supporting the classification of TBI as a chronic condition that can affect individuals throughout their lives. Over 2 days, the workshop explored this objec- tive through sessions that examined the epidemiology, neuropathophysi- ological mechanisms, outcomes, and comorbidities associated with TBI. The discussions also addressed the current landscape of rehabilitative care and identified critical gaps in services. The second day focused on action- able pathways forward, including the application of chronic care models, PREPUBLICATION COPY—Uncorrected Proofs 

CONSIDERING OPPORTUNITIES 85 near-term strategies to enhance care, and the advancement of research for chronic TBI. Harris emphasized that, while the time frame was limited, the agenda was designed to provide a thoughtful exploration of this complex issue. She also extended special thanks to the individuals whose personal stories and video contributions brought a crucial real-world perspective to the conversation. REFERENCES Hoffman, J. M., M. Curran, J. Barber, S. Lucas, J. R. Fann, and J. M. Zumsteg. 2024. Col- laborative care for chronic pain after traumatic brain injury: A randomized clinical trial. JAMA Network Open 7(6):e2413459. Kroenke, K., J. D. Corrigan, R. K. Ralston, R. Zafonte, R. C. Brunner, J. T. Giacino, J. M. Hoffman, D. Esterov, D. X. Cifu, D. C. Mellick, K. Bell, S. G. Scott, A. M. Sander, and F. M. Hammond. 2024. Effectiveness of care models for chronic disease management: A scoping review of systematic reviews. Physical Medicine & Rehabilitation 16(2):174-189. Moriarty, H., L. Winter, T. Short, and G. True. 2018. Exploration of factors related to depres- sive symptomatology in family members of military veterans with traumatic brain injury. Journal of Family Nursing 24(2):184-216. NASEM (National Academies of Sciences, Engineering, and Medicine). 2022. Traumatic brain injury: A roadmap for accelerating progress. Washington DC: The National Academies Press. Oxman, T. E., A. J. Dietrich, J. W. Williams, Jr., and K. Kroenke. 2002. A three-component model for reengineering systems for the treatment of depression in primary care. Psy- chosomatics 43(6):441-450. Ramchand, R., S. Dalton, T. Dubowitz, K. Hyde, N. Malika, A. R. Morral, E. Ohana, V. Parks, T. L. Schell, G. Swabe, T. E. Trail, and K. M. Williams. 2024. American’s military and veteran caregivers: Hidden heroes emerging from the shadows. RAND. http://www. rand.org/t/RRA3212-2. Reynolds, R., S. Dennis, I. Hasan, J. Slewa, W. Chen, D. Tian, S. Bobba, and N. Zwar. 2018. A systematic review of chronic disease management interventions in primary care. BMC Family Practice 19(1):11. Trexler, L. E., and D. Parrott. 2022. The impact of resource facilitation on recidivism for individuals with traumatic brain injury: A pilot, non-randomized controlled study. Brain Injury 36(4):528-535. Wagner, E. 1999. Care of older people with chronic illness. In New ways to care for older people: Building systems based on evidence, edited by E. Calkins, C. Boult, E. Wagner, and J. T. Pacala. New York: Springer. Pp. 39-64. PREPUBLICATION COPY—Uncorrected Proofs 

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