Traumatic brain injury as a chronic disease: insights from the United States Traumatic Brain Injury Model Systems Research Program.

Traumatic brain injury (TBI) is a global health priority, associated with substantial burden. Historically conceptualised as an injury event with finite recovery, TBI is now recognised as a chronic condition that can affect multiple domains of health and function, some of which might deteriorate over time. Many people who have had a TBI remain moderately to severely disabled at 5 years, are rehospitalised up to 10 years post-injury, and have a reduced lifespan relative to the general population. Understanding TBI as a chronic disease process can be highly informative for optimising care, which has traditionally focused on acute care. Chronic brain injury care models must be informed by a holistic understanding of long-term outcomes and the factors that can affect how care needs evolve over time. The United States Traumatic Brain Injury Model Systems of Care follows up individuals with moderate-to-severe TBI for over 30 years, allowing characterisation of the chronic (2-30 years or more post injury) functional, cognitive, behavioural, and social sequelae experienced by individuals who have had a moderate-to-severe TBI and the implications for their health and quality of life. Older age, social determinants of health, and lower acute functional status are associated with post-recovery deterioration, while younger age and greater functional independence are associated with risky health behaviours, including substance misuse and re-injury. Systematically collected data on long-term outcomes across multiple domains of health and function are needed worldwide to inform the development of models for chronic disease management, including the proactive surveillance of commonly experienced health and functional challenges.

Outcomes 1 and 2 Years After Moderate to Severe Traumatic Brain Injury: An International Comparative Study.

OBJECTIVE: This study compared traumatic brain injury (TBI) outcomes from 2 cohorts: the National Institute on Disability, Independent Living, and Rehabilitation Research Traumatic Brain Injury Model Systems (TBIMS) in the United States and Longitudinal Head Injury Outcome Study conducted in Victoria, Australia, by the Monash Epworth Rehabilitation Research Centre (MERRC). DESIGN: Cohort study with 1- and 2-year follow-up. SETTING: Acute trauma care and inpatient rehabilitation with follow-up. PARTICIPANTS: Patients (N=1056) with moderate-severe TBI admitted in 2000-2012 to inpatient rehabilitation after motor vehicle-related collisions, who completed follow-up, were matched using 1:2 matching algorithm based on age at injury, days of posttraumatic amnesia, and years education, resulting in groups of 352 (MERRC) and 704 patients (TBIMS). INTERVENTION: The cohorts had received acute trauma care and inpatient rehabilitation for a median 38 (MERRC) or 33 days (TBIMS). The MERRC group also had routine access to community-based support and rehabilitation for return to work or school, attendant care, and home help as justified, funded by an accident compensation system, whereas the TBIMS cohort had variable access to these services. MAIN OUTCOME MEASURES: Outcomes were assessed 1 and 2 years post injury in terms of employment, living situation, marital status, and Glasgow Outcome Scale-Extended (GOS-E) scores. RESULTS: At 2 years post injury, MERRC participants were more likely to be competitively employed. At both 1 and 2 years post injury, MERRC participants were more likely to be married and living independently. On GOS-E, the TBIMS group had higher percentages of patients in Lower Severe Disability/Vegetative State and Upper Good Recovery than MERRC participants, whereas the MERRC cohort had higher percentages of Lower Moderate Disability than TBIMS. CONCLUSIONS: Findings may suggest that routine provision of community-based supports could confer benefits for long-term TBI outcomes. Further studies documenting rehabilitation services are needed to explore this.

Functional Outcome Trajectories Following Inpatient Rehabilitation for TBI in the United States: A NIDILRR TBIMS and CDC Interagency Collaboration.

OBJECTIVE: To describe trajectories of functioning up to 5 years after traumatic brain injury (TBI) that required inpatient rehabilitation in the United States using individual growth curve models conditioned on factors associated with variability in functioning and independence over time. DESIGN: Secondary analysis of population-weighted data from a multicenter longitudinal cohort study. SETTING: Acute inpatient rehabilitation facilities. PARTICIPANTS: A total of 4624 individuals 16 years and older with a primary diagnosis of TBI. MAIN OUTCOME MEASURES: Ratings of global disability and supervision needs as reported by participants or proxy during follow-up telephone interviews at 1, 2, and 5 years postinjury. RESULTS: Many TBI survivors experience functional improvement through 1 and 2 years postinjury, followed by a decline in functioning and decreased independence by 5 years. However, there was considerable heterogeneity in outcomes across individuals. Factors such as older age, non-White race, lower preinjury productivity, public payer source, longer length of inpatient rehabilitation stay, and lower discharge functional status were found to negatively impact trajectories of change over time. CONCLUSIONS: These findings can inform the content, timing, and target recipients of interventions designed to maximize functional independence after TBI.

Return to Productivity Projections for Individuals With Moderate to Severe TBI Following Inpatient Rehabilitation: A NIDILRR TBIMS and CDC Interagency Collaboration.

OBJECTIVE: Return to work and school following traumatic brain injury (TBI) is an outcome of central importance both to TBI survivors and to society. The current study estimates the probability of returning to productivity over 5 years following moderate to severe brain injury. DESIGN: A secondary longitudinal analysis using random effects modeling, that is, individual growth curve analysis based on a sample of 2542 population-weighted individuals from a multicenter cohort study. SETTING: Acute inpatient rehabilitation facilities. PARTICIPANTS: Individuals 16 years and older with a primary diagnosis of TBI who were engaged in school or work at the time of injury. MAIN OUTCOME MEASURES: Participation in productive activity, defined as employment or school, as reported during follow-up telephone interviews at 1, 2, and 5 years postinjury. RESULTS: Baseline variables, age of injury, race, level of education and occupational category at the time of injury, disability rating at hospital discharge, substance abuse status, and rehabilitation length of stay, are significantly associated with probability of return to productivity. Individual-level productivity trajectories generally indicate that the probability of returning to productivity increases over time. CONCLUSIONS: Results of this study highlight the importance of preinjury occupational status and level of education in returning to productive activity following moderate to severe TBI.

National Institute on Disability, Independent Living, and Rehabilitation Research Burn Model System: Review of Program and Database.

The Burn Model System (BMS) centers program was created in 1994 to evaluate the long-term outcomes of burn injuries. As part of this multicenter program, a comprehensive longitudinal database was developed to facilitate the study of a number of functional and psychosocial outcomes after burn injury. In this article, we provide an overview of the data collection procedures, measures selection process, and an overview of the participant data collected between 1994 and 2016. Surveys were administered during hospitalization and at 6, 12, and 24 months after discharge, and in the most recent funding cycle, data collection at every 5 years postinjury was added. More than 7200 people with burn injury were eligible to participate in the BMS National Longitudinal Database. Of these, >5900 (82%) were alive at discharge and consented to follow-up data collection. The BMS National Longitudinal Database represents a large sample of people with burn injury, including information on demographic characteristics, injury characteristics, and health outcomes. The database is publicly available and can be used to examine the effect of burn injury on long-term outcomes.

Introduction to the NIDILRR Burn Model System (BMS) Program: Selected Findings II.

A special supplement to the Archives of Physical Medicine and Rehabilitation in 2007 reported selected findings of research from the first 13 years of the BMS Centers and Database Coordinating Center. This special supplement is the second such effort and reports on the growth of the BMS National Longitudinal Database (BMS NDB) since that time and select new research findings from the BMS centers.

Challenges to the Standardization of Trauma Data Collection in Burn, Traumatic Brain Injury, Spinal Cord Injury, and Other Trauma Populations: A Call for Common Data Elements for Acute and Longitudinal Trauma Databases.

OBJECTIVE: Common data elements (CDEs) promote data sharing, standardization, and uniform data collection, which facilitate meta-analyses and comparisons of studies. Currently, there is no set of CDEs for all trauma populations, but their creation would allow researchers to leverage existing databases to maximize research on trauma outcomes. The purpose of this study is to assess the extent of common data collection among 5 trauma databases. DESIGN: The data dictionaries of 5 trauma databases were examined to determine the extent of common data collection. Databases included 2 acute care databases (American Burn Association's National Burn Data Standard and American College of Surgeons' National Trauma Data Standard) and 3 longitudinal trauma databases (Burn, Traumatic Brain Injury, Spinal Cord Injury Model System National Databases). Data elements and data values were compared across the databases. Quantitative and qualitative variations in the data were identified to highlight meaningful differences between datasets. SETTING: N/A. PARTICIPANTS: N/A. INTERVENTIONS: N/A. MAIN OUTCOME MEASURES: N/A. RESULTS: Of the 30 data elements examined, 14 (47%) were present in all 5 databases. Another 9 (30%) elements were present in 4 of the 5 databases. The number of elements present in each database ranged from 23 (77%) to 26 (86%). There were inconsistencies in the data values across the databases. Twelve of the 14 data elements present in all 5 databases exhibited differences in data values. CONCLUSIONS: This study demonstrates inconsistencies in the documentation of data elements in 5 common trauma databases. These discrepancies are a barrier to database harmonization and to maximizing the use of these databases through linking, pooling, and comparing data. A collaborative effort is required to develop a standardized set of elements for trauma research.

Acute Ischemic Stroke After Moderate to Severe Traumatic Brain Injury: Incidence and Impact on Outcome.

BACKGROUND AND PURPOSE: Traumatic brain injury (TBI) leads to nearly 300 000 annual US hospitalizations and increased lifetime risk of acute ischemic stroke (AIS). Occurrence of AIS immediately after TBI has not been well characterized. We evaluated AIS acutely after TBI and its impact on outcome. METHODS: A prospective database of moderate to severe TBI survivors, admitted to inpatient rehabilitation at 22 Traumatic Brain Injury Model Systems centers and their referring acute-care hospitals, was analyzed. Outcome measures were AIS incidence, duration of posttraumatic amnesia, Functional Independence Measure, and Disability Rating Scale, at rehabilitation discharge. RESULTS: Between October 1, 2007, and March 31, 2015, 6488 patients with TBI were enrolled in the Traumatic Brain Injury Model Systems National Database. One hundred and fifty-nine (2.5%) patients had a concurrent AIS, and among these, median age was 40 years. AIS was associated with intracranial mass effect and carotid or vertebral artery dissection. High-velocity events more commonly caused TBI with dissection. AIS predicted poorer outcome by all measures, accounting for a 13.3-point reduction in Functional Independence Measure total score (95% confidence interval, -16.8 to -9.7; P<0.001), a 1.9-point increase in Disability Rating Scale (95% confidence interval, 1.3-2.5; P<0.001), and an 18.3-day increase in posttraumatic amnesia duration (95% confidence interval, 13.1-23.4; P<0.001). CONCLUSIONS: Ischemic stroke is observed acutely in 2.5% of moderate to severe TBI survivors and predicts worse functional and cognitive outcome. Half of TBI patients with AIS were aged ≤40 years, and AIS patients more often had cervical dissection. Vigilance for AIS is warranted acutely after TBI, particularly after high-velocity events.

Unemployment in the United States after traumatic brain injury for working-age individuals: prevalence and associated factors 2 years postinjury.

OBJECTIVE: To estimate the prevalence of unemployment and part-time employment in the United States for working-age individuals completing rehabilitation for a primary diagnosis of traumatic brain injury (TBI) between 2001 and 2010. DESIGN: Secondary data analysis. SETTING: Acute inpatient rehabilitation facilities. PARTICIPANTS: Patients aged 16 to 60 years at injury who completed inpatient rehabilitation for TBI between 2001 and 2010. MAIN OUTCOME MEASURES: Unemployment; Part-time employment. RESULTS: The prevalence of unemployment for persons in the selected cohort was 60.4% at 2-year postinjury. Prevalence of unemployment at 2-year postinjury was significantly associated with the majority of categories of age group, race, gender, marital status, primary inpatient rehabilitation payment source, education, preinjury vocational status, length of stay, and Disability Rating Scale. The direction of association for the majority of these variables complement previous research in this area, with only Hispanic ethnicity and the FIM Cognitive subscale demonstrating disparate findings. For those employed at 2-year postinjury, the prevalence of part-time employment was 35.0%. The model of prevalence for part-time employment at 2-year postinjury was less robust, with significant relationships with some categorical components of age group, gender, marital status, primary payment source, preinjury vocational status, and Disability Rating Scale. CONCLUSIONS: The prevalence of unemployment for patients completing inpatient rehabilitation for TBI was substantial (60.4%). The majority of factors found to associate with 2 years' unemployment were complementary of previously published research; however, these were often smaller in magnitude than previous reports. The prevalence of part-time employment was also an issue for this cohort and included 35.0% of all employed individuals. In regard to the determination of factors associated with part-time employment, additional analyses that include more fine-grained factors associated with employment, including physical and psychosocial functioning, are recommended.

Life Expectancy after Inpatient Rehabilitation for Traumatic Brain Injury in the United States.

This study characterized life expectancy after traumatic brain injury (TBI). The TBI Model Systems (TBIMS) National Database (NDB) was weighted to represent those ≥16 years of age completing inpatient rehabilitation for TBI in the United States (US) between 2001 and 2010. Analyses included Standardized Mortality Ratios (SMRs), Cox regression, and life expectancy. The US mortality rates by age, sex, race, and cause of death for 2005 and 2010 were used for comparison purposes. Results indicated that a total of 1325 deaths occurred in the weighted cohort of 6913 individuals. Individuals with TBI were 2.23 times more likely to die than individuals of comparable age, sex, and race in the general population, with a reduced average life expectancy of 9 years. Independent risk factors for death were: older age, male gender, less-than-high school education, previously married at injury, not employed at injury, more recent year of injury, fall-related TBI, not discharged home after rehabilitation, less functional independence, and greater disability. Individuals with TBI were at greatest risk of death from seizures; accidental poisonings; sepsis; aspiration pneumonia; respiratory, mental/behavioral, or nervous system conditions; and other external causes of injury and poisoning, compared with individuals in the general population of similar age, gender, and race. This study confirms prior life expectancy study findings, and provides evidence that the TBIMS NDB is representative of the larger population of adults receiving inpatient rehabilitation for TBI in the US. There is an increased risk of death for individuals with TBI requiring inpatient rehabilitation.

US population estimates of health and social outcomes 5 years after rehabilitation for traumatic brain injury.

OBJECTIVE: To estimate the number of adults in the United States from 2006 to 2012 who manifest selected health and social outcomes 5 years following a traumatic brain injury (TBI) that required acute inpatient rehabilitation. DESIGN: Secondary data analysis. SETTING: Acute inpatient rehabilitation facilities. PARTICIPANTS: Patients 16 years and older receiving acute inpatient rehabilitation for a primary diagnosis of TBI. MAIN OUTCOME MEASURES: Mortality, functional independence, societal participation, subjective well-being, and global outcome. RESULTS: Annually from 2001 to 2007, an average of 13 700 patients aged 16 years or older received acute inpatient rehabilitation in the United States with a primary diagnosis of TBI. Approximately 1 in 5 patients had died by the 5-year postinjury assessment. Among survivors, 12% were institutionalized and 50% had been rehospitalized at least once. Approximately one-third of patients were not independent in everyday activities. Twenty-nine percent were dissatisfied with life, with 8% reporting markedly depressed mood. Fifty-seven percent were moderately or severely disabled overall, with 39% having deteriorated from a global outcome attained 1 or 2 years postinjury. Of those employed preinjury, 55% were unemployed. Poorer medical, functional, and participation outcomes were associated with, but not limited to, older age. Younger age groups had poorer mental and emotional outcomes. Deterioration in global outcome was common and not age-related. CONCLUSIONS: Significant mortality and morbidity were evident at 5 years postinjury. The deterioration in global outcomes observed regardless of age suggests that multiple influences contribute to poorer outcomes. Public health interventions intended to reduce post-acute inpatient rehabilitation mortality and morbidity rates will need to be multifaceted and age-specific.

Common data elements for research on traumatic brain injury: pediatric considerations.

Traumatic brain injury (TBI) is a significant global health problem, with a notably high incidence in children and adolescents. Despite the prevalence of TBI and the disabilities that often follow, research on which to base effective treatment is limited by several challenges, including but not limited to the complexity and heterogeneity of TBI. Even when rigorous methods are employed, the utility of the research may be limited by difficulties in comparing findings across studies resulting from the use of different measures to assess similar TBI study variables. Standardization of definitions and data elements is an important step toward accelerating the process of data sharing that will ultimately lead to a stronger evidence base for treatment advances. To address this need, recommendations for common data elements (CDEs) for research on TBI were developed through a 2009 national initiative. To ensure that the TBI CDE recommendations are relevant to pediatric populations, the National Institute on Disability and Rehabilitation Research (NIDRR) and the National Institute of Neurological Disorders and Stroke (NINDS) called for a review of the original recommendations. Following the process used for the original initiative, multidisciplinary work groups composed of pediatric TBI experts were formed (Demographics and Clinical Assessment; Biomarkers; Neuroimaging; and Outcomes Assessment). Recommendations for modifications and additions to the original CDEs were developed by the work groups, vetted at a 2010 workshop and further refined in preparation for publication. The pediatric considerations for TBI CDEs are described in a series of articles in this journal. This article describes the efforts leading to this pediatric CDE initiative and the CDE review and development process. It concludes with general recommendations for future iterations of the CDE initiative.

Advancing integrated research in psychological health and traumatic brain injury: common data elements.

In civilian, military, and veteran populations, there is increased recognition of the interrelationship between traumatic brain injury (TBI) and some psychological health (PH) disorders and the need to better understand the relationships by integrating research for these topics. The use of different measures to assess similar study variables and/or assess outcomes may limit important advances in PH and TBI research. Without a set of common data elements (CDEs; to include variable definitions and recommended measures for the purpose of this discussion), comparison of findings across studies is challenging. The federal agencies involved in PH and TBI research, the National Institute of Neurological Disorders and Stroke, Department of Veterans Affairs, National Institute on Disability and Rehabilitation Research, Defense Centers of Excellence for Psychological Health and Traumatic Brain Injury, and Defense and Veterans Brain Injury Center, therefore cosponsored a scientific initiative to develop CDEs for PH and TBI research. Scientific experts were invited to participate in 1 of 8 working groups to develop recommendations for specific topic-driven CDEs. Draft recommendations were presented and discussed in the workshop "Advancing Integrated Research in Psychological Health and Traumatic Brain Injury: Common Data Elements (CDE)" held on March 23-24, 2009, in Silver Spring, MD. The overall process leading to the workshop and subsequent recommendations by the working groups are presented in this article. Topic-driven recommendations for CDEs are presented in individual reports in this edition.