... Data Capture, Surveillance, and Supporting Long-Term Care Needs...

... Most traumatic brain injury (TBI) burden estimates are generated from hospital data, resulting in rates that skew toward severe TBI and underestimate the true prevalence of TBI. (Daugherty)...

... The Centers for Disease Control and Prevention’s National Concussion Surveillance System pilot survey found that 12 percent of adults and 10 percent of children reported experiencing a head injury in the past year, representing significant increases from prevalence rates in other ...

... The 2023 and 2024 National Health Interview Surveys now feature five questions on TBI and provide national-level surveillance data. (Daugherty)...

... State registry data can be used to better understand state-level TBI rates, but usage guidelines vary by state and data are limited to individuals who visit the hospital. (Miller)...

... Lack of interoperability poses a barrier to synthesizing data from numerous and varied sources collecting data on individuals with TBI. (Miller)...

... 1 This list reflects the rapporteurs’ summary of points made by the identified speakers, and the statements have not been endorsed or verified by the National Academies of Sciences, Engineering, and Medicine. They are not intended to reflect ...

... Virginia is conducting TBI screening efforts in community-based services such as domestic violence and mental health programs to fill data gaps. (Miller)...

... Efforts to standardize questions included on state surveys could facilitate a better understanding of the nationwide effects of TBI. (Miller)...

... Sheltering Arms Rehabilitation Centers monitor and collect data on all practices, analyze data to increase intervention effectiveness, and track and assist individuals after services end to improve outcomes. (Miller)...

... The risk for numerous conditions increases with TBI, such as sleep disorders, cardiovascular disease, cancer, accidents, suicide, and homicide. (Hoffman)...

... The Department of Veterans Affairs is working to improve TBI outcomes by exploring and developing multimodal TBI biomarkers, improving screening and evaluation methods, and evaluating a multidisciplinary care approach for potential ...

... The sixth session of the workshop focused on national, state-level, and agency data analysis efforts to inform public health and patient care strategies. It spotlighted programs by the Centers for Disease Control and Prevention (CDC), the Virginia Department for Aging & ... Services (DARS), and the Department of Veterans Affairs (VA) to collect surveillance data, collaborate with community partners, and ultimately improve outcomes for individuals living with traumatic brain injury (TBI). Kristine Yaffe, director of the Center for Population Brain ... the University of California, San Francisco; Rebeccah Wolfkiel, executive director at the National Association for State Head Injury Administrators; and Corinne Peek-Asa, vice chancellor for research at University of California, San Diego, served as moderators of the session....

... TRAUMATIC BRAIN INJURY SURVEILLANCE AT CDC...

... the National Concussion Surveillance System. The CDC TBI team has four prioritized goals: (1) identify effective strategies to prevent youth sports- and recreation-related TBI, (2) identify and test methods to improve the measurement of TBI burden, (3) characterize TBI-related disparities and identify ...

... equity, and (4) determine effective strategies to improve the diagnosis and management of TBI. Highlighting the second goal, she explained that CDC efforts to better understand the public health burden of TBI include ... surveillance, monitoring trends in TBI incidence and prevalence, and identifying groups disproportionately affected by TBI. Surveillance aids in the development of specialized TBI interventions and in the detection of ... disease burden. Moreover, TBI surveillance increases the understanding of the most common principal mechanisms of injury and informs creation of mechanism-based TBI prevention efforts....

... or urgent care setting or did not seek care. Hence, TBI burden data are skewed toward more severe TBIs that require hospitalization or cause death and underestimate the true prevalence of TBI in the United States. Over the past decade, CDC has worked to establish a National Concussion Surveillance ...

... 2014 National Academies consensus study, Sports-Related Concussions in Youth: Improving the Science, Changing the Culture, outlined gaps in incidence and prevalence estimates of youth sports-related concussion and recommended that CDC establish and oversee a national surveillance system to accurately ... indicated support for the NCSS via the TBI Program Reauthorization Act of 2018, which stated that CDC may implement concussion data collection and analysis to determine the prevalence and incidence of concussion.2 However, it was not until December 2022 that Congress made a budget appropriation ... concussion surveillance. The CDC TBI team designed and fielded an NCSS pilot in 2018 and 2019 with the primary goals of testing methodology and evaluating a novel TBI case definition for use in classifying TBI based on self-report data....

... 2 Traumatic Brain Injury Program Reauthorization Act of 2018, Public Law 115-377, 115th Cong., 2d sess. (December 21, 2018)....

... Methodology featured a household survey administered via computer-assisted random digit dial telephone survey. The pilot study interviewed adults about head injuries that they or their children sustained in the previous 12 months, ... and adolescents aged 13 to 17 years were interviewed separately. Researchers collected information on signs and symptoms experienced after each head injury, participant demographics, mechanism of injury—including whether the injury was sports related— ... care received, and indicators of postinjury functioning. Data collection launched in September 2018 and concluded 1 year later after obtaining completed surveys on approximately 10,000 adults, 3,500 children ages 5 to 17 years by proxy reporting from ... parents, and 198 adolescents....

... Preliminary conclusions of the NCSS pilot data indicate that 12 percent of adults and 10 percent of children reported experiencing a head injury in the prior year, constituting higher percentages than found in other surveys, said ...

..., researchers determined the pilot study was overly complex. The survey included questions regarding up to three head injuries the adult experienced and up to three head injuries per child for up to seven children in the household. In households with high burden, the survey became excessively lengthy, ... the need for a streamlined collection tool. Additionally, the sample size of 198 adolescents was much smaller than that of younger children and of adults owing to the difficulty in gaining consent to interview adolescents directly....

... Proposed NCSS next steps include an address-based sampling methodology to survey randomly selected adults about head injuries sustained in the previous 12 months, Daugherty said. Researchers plan to make the survey less burdensome by ... , respondents will have the option of completing the survey by telephone call-in or online. The pilot generated a revised TBI case definition, and this will serve as the basis for incidence and prevalence estimates. CDC has awarded a contract for the next iteration of NCSS, which will use a ...

... Expanding the Knowledge Base...

... A continuously operating NCSS would increase the TBI knowledge base by providing national prevalence and incidence estimates of TBI in...

... or mortality. Surveillance data could deepen the understanding of TBI outcomes in terms of common symptoms, the amount of time missed from work or school as a result of injury, and whether medical evaluation was sought. Furthermore, researchers could use NCSS data to identify those who are at a higher ...

... been collecting data with a large sample size for several decades. Two of the five added questions pertain to TBI prevalence, two ask about sports- and recreation-related TBI, and one question regards medical evaluation after injury. The 2024 survey will repeat these questions and will provide ...

... Behavioral Risk Factor Surveillance System (BRFSS) gathers nationally representative data via an annual survey.4 The survey content varies by state, and TBI questions are not part of the core survey, precluding the generation of nationally representative data on TBI. Although some states have opted to ... modules for TBI, the questions vary by state and data cannot necessarily be easily combined nor compared. The CDC TBI team is working to increase adoption of optional TBI modules among additional ... to expand the state-level TBI data available. She noted that BRFSS data are released approximately 8 months after data collection, demonstrating CDC’s ...

... DEVELOPING LEARNING HEALTH SYSTEMS TO SUPPORT LONG-TERM CARE NEEDS...

... Christiane Miller, director of the DARS Brain Injury Services Coordination (BISC) Unit, focused on the key roles that state-level data and community-based services play in care once patients leave the hospital, and discussed efforts in Virginia to collect and integrate data from a ... of sources—including community service providers—to better understand...

... outcomes and improve supports for people with TBI. The Virginia Department of Health (VDH) uses registry data for outreach and other needs. In collaboration with the Brain Injury Association of Virginia, BISC sends outreach letters to all people identified by the trauma-...

... Guidelines vary from state to state in terms of limits to data registry access and whether multiple outreach efforts are allowed. Additionally, statutes for registries are not funded in all states, and thus not all states have ... . In Virginia, registry data are underused and are only now being explored for uses beyond outreach, said Miller. Hospitals are required to upload data to the VDH database on a quarterly basis. ... , the participation rate of hospitals completing the majority of data elements has increased dramatically. Given that these data contain demographic and geographic information and the first point of hospital discharge, mining the registry data and combining it with other sources could create a more ... and accurate picture of TBI in Virginia....

... Miller emphasized that registry data are sourced from hospitals and therefore do not include individuals unless they visit the emergency department for their head injuries. Access to registry data often becomes ...

.... Researchers collected data on the use of inpatient and outpatient treatment from APCD, data on employment outcomes for students graduating from high school from RSA-911, and approximately 35 years of long-term outcomes data from TBI Model Systems. Thus far, efforts to integrate these...

... datasets have been unsuccessful because of the lack of common identifiers. In recent years, Virginia has developed a data trust, and this may prove useful in the future....

... lack of connected data systems led to the Virginia Brain Injury Data Sharing Summit in 2022, at which brain injury professionals, service providers, and state agency representatives convened to discuss ways forward. Among the needs highlighted at the summit, a better understanding of where people with ... receive community-based services outside of the TBI system was identified as necessary for facilitating connections and collaborations needed to effectively collect and use TBI data. For example, domestic violence programs, jails, department of corrections, ... programs, and mental health programs often interact with individuals with TBI, and screening conducted at such sites could fill data gaps. Furthermore, the summit identified the need to better understand TBI comorbidities and other ... -occurring challenges in order to develop training, screening, and collaborative services for TBI clients who also face issues related to mental health, substance use disorder, intellectual or developmental ... , housing, employment, and/or aging....

... Currently, a Virginia-wide TBI screening effort is taking place in domestic violence programs, and three pilot programs in homeless shelters will soon begin implementation. Additionally, a federal grant-funded pilot screening program will be ... in at least two community-based mental health programs and one state mental health facility. She emphasized the importance of designing sustainable efforts and embedding these into the processes of all ... and stakeholder groups....

... Following the initial research project and data summit, a second 3-year trust fund grant was awarded to the VCU TBI Model System to research transitions and disparities in care and outcomes ... neurotrauma, said Miller. This work will identify when and how transitions of care occur, how these transitions affect outcomes, and those at greater risk of experiencing negative health outcomes. Moreover, BISC is working to gather data via the BRFSS. As Daugherty mentioned, BRFSS ... Virginia, it would contribute to a clearer picture of the nationwide effects of TBI. These data could potentially inform treatment, advocacy, policy, and funding. Cost for the BRFSS varies across states and can be prohibitive. She raised the idea of TBI experts collaboratively identifying a set of ... and advocating for...

... state. Such an effort would enable the comparison of outcome indicators such as health status, number of healthy days, health care access, exercise, and alcohol consumption....

... Virginia uses state funds to purchase case management, day support, and other related services from eight community-based brain injury service providers, Miller described. Historically, the data required from these ... has been limited to the numbers of clients served and their demographic information. Efforts are currently underway to collect data on outcomes, which would aid in identifying services that are most ... and areas that need more support. The state could then direct funding with more precision. On January 1, 2024, Virginia amended its state plan to include ... of Medical Assistance Services. Prior to this collaboration, BISC lacked state-level data on individuals with TBI from Medicaid health care claims and on services provided via developmental disability Medicaid waiver.5 The effort to establish Medicaid reimbursement for brain injury services opened a ... of data to BISC; the unit plans to analyze data from Medicaid, managed care organizations, and state-funded providers to identify outcomes....

... Arms Rehabilitation Centers as an example of a learning health system (LHS). In partnership with the VCU TBI Model System, Sheltering Arms collects and uses data to evaluate the effectiveness of their practices and protocols. Monitoring extends to all practices, including those identified as evidence- ... best practices, to determine the effectiveness of processes and interventions with different individuals. Sheltering Arms works to identify differences in effectiveness stemming from specific individual needs or ... -based organization established a care transitions program in which community health workers track patients for 6 to 12 months to provide information and to help ensure that patients are attending medical appointments and taking prescribed medications. She noted that these services resemble transition-...

... 5 States request Medicaid waivers from the Centers for Medicare and Medicaid Services (CMS). Waiver programs allow states to provide covered home- and community-based services and supports to qualifying individuals. Information on such waiver programs is available at https://www.medicaid.gov/...

... with caregivers to determine needed supports. Miller commented on the invaluable insight gleaned from direct communication with individuals with TBI and their caregivers, and she urged researchers to routinely engage in dialogue with TBI survivors, even if only on an annual basis, to gain perspective ...

... LEARNING HEALTH SYSTEMS FOR TRAUMATIC BRAIN INJURY IN THE VA...

... Stuart Hoffman, senior health science officer for TBI for the VA Office of Research and Development, discussed VA efforts to better understand TBI comorbidities, develop TBI multimodal biomarkers, improve screening and evaluation efforts, and identify and scale effective treatment approaches. ... He outlined that an LHS involves systems of leadership, governance, community building, research, data and analytics, and quality improvement (Lannon et al., 2021). Leadership encourages a network to perform as a system, governance directs research, community building ... connections between investigators and clinicians, and research and data analytics inform improvements in health care services and generate innovation....

... Causes of TBI in service members include training, shoulder-fired weapons, and occupational blast, and often involve repetitive exposures, Hoffman explained. He recounted an exchange years ago with a veteran receiving care at the Defense and Veterans ... stemmed from post-traumatic stress disorder (PTSD), not TBI. This gave him pause, as the veteran was receiving care at a brain injury center and not at a mental health treatment facility. He began to consider the various treatment destinations for veterans with TBI, including mental health ... , neurology providers, and physical medicine and rehabilitation. Additionally, some individuals who enter the armed forces are at a higher risk for TBI. For example, rural areas are overrepresented ...

... and chronic pain (Lew et al., 2009). Hoffman explained that at that time, an understanding of TBI’s complexity was beginning to emerge. Up to that point, some mental health professionals believed that any brain injury–related ... than 30 days should be attributed to a mental health issue rather than TBI. Care providers now know that in some cases TBI symptoms last for years and often co-occur with conditions such as sensory disorders; psychological conditions including PTSD, depression, substance use disorder, and suicidal ... ; chronic pain; mobility issues; cognitive disorders; executive dysfunction; effort control impairment; and endocrine dysfunction. A 2021 study of nearly 200,000 VA electronic health records (EHRs) found that, after adjusting for demographics and medical ... to develop a sleep disorder than veterans without TBI (Leng et al., 2021). He emphasized that poor sleep quality affects health, mental health, and quality of life....

... Having TBI increases one’s risk of cardiovascular disease (CVD), and both TBI and CVD are risk factors for dementia, said Hoffman (Kornblith et al., 2022). Moreover, veterans with TBI have higher mortality rates from accidents, ... , cancer, CVD, and homicide than veterans without TBI and the general population (Howard et al., 2022). Suicide rates are 57 percent higher for veterans than for nonveterans, and TBI exacerbates this risk ( ... rate seen among veterans with TBI. He noted that an upcoming paper examines an increased risk for certain cancers associated with moderate, severe, and penetrating brain injury. The increased risk of mental and physical health problems for people with TBI shortens lives and may also play a role in ...

... Biomarkers Research, Screening, and Evaluation...

... The Commander John Scott Hannon Veterans Mental Health Care Improvement Act of 2019 includes a requirement via section 305 that VA fund an initiative to identify, ... validate, and integrate brain and mental health biomarkers among veterans, Hoffman said.6 The requirement launched the Precision Mental Health for Veterans Initiative, which uses ... studies to meet the intent of the law and develop multimodal biomarkers...

... 6 Commander John Scott Hannon Veterans Mental Health Care Improvement Act of 2019, Public Law 116-171, 116th Cong., 2d sess. (October 17, 2020)....

... using imaging, assessments, fluid markers, and physiological measures. The longitudinal studies come from the Long-term Impact of Military-relevant Brain Injury Consortium—Chronic Effects of ... Consortium (LIMBIC-CENC) and the Translational Research Center for TBI and Stress Disorders (TRACTS). A partnership between VA and DoD, LIMBIC-CENC is a federally funded research project to better understand, treat, and prevent TBI.7 This project follows a cohort of veterans and ... members broken into subgroups: TBI, TBI in addition to a mental health condition, a mental health condition and no TBI, and a control group. Based in Boston, TRACTS is a Rehabilitation Research and Development National Center for TBI Research that features long-term ... TBI populated cohorts and has been operating for over a decade.8 The Precision Mental Health for Veterans Initiative is working to integrate biomarker measures into a clinical,...

... Current VA data collection efforts include screening and a comprehensive evaluation of veterans from Operation Enduring Freedom, Operation Iraqi Freedom, and Operation New Dawn, said Hoffman (Figure 6-1). ... VA is evaluating a multidisciplinary care approach for veterans with TBI to streamline access to neurological care, physical rehabilitation services, and mental health care....

... sites, with potential scaling to other VA sites nationwide. Additionally, a longitudinal study focusing on veterans with mild TBI is underway, and an upcoming longitudinal study will examine the trajectories of veterans with severe TBI. Hoffman emphasized that ongoing communication with ... enables researchers to understand treatment needs, and the resulting research generates findings that inform clinicians of best practices....

... 7 More information about the Long-term Impact of Military-relevant Brain Injury Consortium—Chronic Effects of Neurotrauma Consortium is available at https://www.limbic-cenc.org/ (accessed December 6, 2023)....

... 8 More information about the Translational Research Center for TBI and Stress Disorders is available at https://www.va.gov/boston-health-care/research/the-translational-research-center-for-tbi-and-stress-disorders-tracts/...

... FIGURE 6-1 Examples of how the Department of Veterans Affairs is using research infrastructure and integration with clinical care to support better outcomes for veterans with TBI....

... NOTE: IETP = Intensive Evaluation and Treatment Program; QUERI = VA Quality Enhancement Research Initiative....

... in a clinical setting were included in the incidence estimate. To address this, the study is using a tiered case definition that uses reported signs and symptoms to distinguish between a “probable TBI” and a “possible TBI.” For instance, a head injury with the sole symptom of headache would be ... TBI. This distinction will enable researchers to divide cases according to “probable” or “possible” TBI classification before prevalence and incidence estimates are published. Thereby, a more conservative estimate will include only the probable TBIs, such as people with head injuries who ...

... in the NCSS pilot study and the lower estimates in other studies. The 2017 Youth Risk Behavior Surveillance system estimated that 15 percent of high school students reported a past-year concussion from participating in sports (DePadilla et al., 2018). She noted that estimates from studies based solely on ...

.... A grant from the Administration for Community Living (ACL) funds the screening pilot programs that will soon be implemented in homeless shelters and community- and facility-based mental health providers. A prior ACL grant enabled the VCU...

... TBI Model System collaboration that explored data sharing and led to the Virginia Brain Injury Data Sharing Summit....

... Wolfkiel asked Miller to discuss the role of screening and the use of screening data in service provision. Community screening enables the identification of people with TBI in non-health care settings, Miller ... providers working with populations at higher risk for TBI, she emphasized. The screening programs involve training for community service providers and partners these organizations with local, community-based brain injury programs....

... To facilitate TBI screening, the National Association of State Head Injury Administrators (NASHIA) launched the Online Brain Injury Screening and Support System (OBISS), an online, cloud-based version of the Ohio State University TBI Identification Method.9 The screening tool’s online format ... of incorporating a screening tool into the EHR. The advent of OBISS made it possible to instead purchase a subscription for the screening tool and reallocate remaining funds to other needs. During intake, staff can review the OBISS results and indicate in the EHR when an individual is at risk of ... TBI. The EHR can then trigger referral processes for therapists and case management teams. Simultaneously, this system provides BISC with state-level OBISS data....

... Given the current political unrest and major disasters affecting many of the world’s continents, traumatic stress and biomechanical traumatic...

... will likely increase, Peek-Asa noted. She asked how systems might approach integrating factors such as biochemical sequelae of psychological trauma and biomechanical, cellular, and physical damage to neurons and brain structures. Hoffman replied that this complex interplay warrants care from ... , multidisciplinary care teams, such as the teams in place at the Palo Alto, San Antonio, Tampa, Richmond, and Minneapolis VA Polytrauma Rehabilitation Centers. Transferring this care approach to the private sector would likely require a payment algorithm that ...

... study. A group from the VA Hudson Valley health care system has been conducting telemedicine evaluations on a smaller scale for several years and has seen positive outcomes from this effort. Thus, VA is looking at scaling this approach and determining the feasibility of having staff available ...

... Donald Berwick, president emeritus and senior fellow of the Institute for Healthcare Improvement, asked about the status of state Medicaid waivers for TBI, whether a template or model ... is available to aid additional states in implementation, and how many states are currently providing this eligibility status to individuals with TBI. As noted by Miller, state Medicaid waivers that enable ... term home- and community-based services and supports are an important aspect of the care ecosystem for many people impacted by TBI, highlighting how the learning health system concept for TBI ...

... Miller noted that there are multiple options for TBI-relevant waivers, including community-based waivers and pilot demonstration waivers. John Corrigan, director of the Ohio Valley Center for Brain Injury Prevention and Rehabilitation, stated that ... 19 states currently have TBI Medicaid waivers in place. The variance between waivers reflects a lack of standardization that may warrant consideration of creating a template or model. However, a general trend away from additional population-specific Medicaid ... is at play, and some states have recently incorporated...

... also shared her experience in seeking a TBI Medicaid waiver in Virginia, which has not yet been approved. The process of demonstrating feasibility and obtaining approval for new waivers is often complex. In Virginia, for example, efforts to obtain a TBI waiver have involved the state Medicaid agency ... well as colleagues from NASHIA and technical assistance funds from CMS....

... into plans for a nationally weighted data sample. Daugherty remarked on the feedback received from states on the value of state-level TBI prevalence and incidence estimates. A potential opportunity to meet the needs for both nationally representative estimates and state-level estimates involves ... NCSS on a scale large enough to produce both state and national estimates. This would necessitate expanding NCSS by an approximate magnitude of 20 in terms of sample size and resources needed. Although such a development would not take place for several ... option is to use BRFSS by adding TBI questions to the core survey. In the event that changing the core survey is not feasible, NCSS could create a standardized module that states could adopt to enable state-to-state comparisons. She noted that states currently must opt in to include TBI questions on ... BRFSS surveys. CDC is exploring the feasibility of various approaches to generating both state- and national-level TBI surveillance data....

... Hoffman called for advocacy toward a national act for TBI similar to the National Alzheimer’s Project Act, which increased treatment and research for Alzheimer’s disease (AD).10 Given that a greater number of people in the United States are experiencing lingering TBI symptoms than AD- ... dementia, and that a portion of individuals with AD likely had one or more TBIs in their lifetime, TBI warrants increased services, funding for better care, and ...