Disability and Rehabilitation Research Projects (DRRP) Program: Research on Traumatic Brain Injury (TBI) As a Lifelong Condition

Background:Traumatic brain injury (TBI) is a significant cause of death and disability in the United States. According to the Centers for Disease Control and Prevention (CDC, 2024), there were approximately 214,110 TBI-related hospitalizations and 69,473 TBI-related deaths in 2021. For a number of well-documented reasons, these figures are understood to be underestimates of the number of TBIs. Despite the challenges to accurately measure the incidence and prevalence of TBI, available data support the conclusion that TBI is a substantial public health issue and is increasing in incidence (NASEM, 2022). The effects of TBI are also experienced by the families, caregivers, and communities of those who are injured, and lead to substantial investment in physical, emotional, and financial efforts to support people with TBI (NASEM, 2022; Ramchand et al., 2014).While some people with TBI experience a full recovery, others experience life-long effects. Mounting scientific evidence over the last two decades supports the understanding of moderate and severe TBI as a chronic disease. Chronic diseases are broadly defined as conditions that last one year or more and require ongoing medical attention or limit activities of daily living or both (CDC, 2019).Through its TBI Model System Centers Program, NIDILRR has invested in over three decades of research to better understand the long-term outcomes of people with TBI and the treatments that facilitate recovery (Dijkers, Marwitz, & Harrison-Felix, 2018). Results of this research have provided evidence of the long-term impact of TBI on function and disability, cognition, physical and behavioral health, participation, and life satisfaction and of the dynamic nature of those outcomes over time (Dams-O’Conner et al., 2023; Whiteneck et al., 2018).Despite accumulated evidence over the last decade that supports TBI as a life-long condition, the current systems of healthcare are not well-aligned with this understanding. Those systems are built on the earlier assumption that recovery following TBI is static after reaching a plateau in improvements. This dichotomy has heightened awareness of the need for chronic care management, a cohesive framework, and associated services and supports for maximizing outcomes. Chronic care management has long been used for other chronic conditions such as diabetes, cardiovascular disease, cancer, and chronic respiratory disease, to name a few.For health care clinicians to maximize improvement and minimize decline in people with TBI, they must understand the dynamic and life-long nature of brain injury. Clinicians must also be aware of the best-suited interventions, and have health care payer systems that provide coverage for those services. As a next step in support of this goal, NIDILRR will fund research to develop and test interventions, services, and supports to address the life-long health care needs of people with TBI.References:Centers for Disease Control and Prevention (2024). TBI Data. https://www.cdc.gov/traumatic-brain-injury/data-research/index.html #:~:text=Based %20on%20the %20most % 20 recent , TBI %2Drelated%20deaths%20per%20day. Centers for Disease Control and Prevention (2019). About Chronic Diseases. https://www.cdc.gov/chronic-disease/about/?CDC_ AAref_ Val= https:// www.cdc. gov/ chronic disease/about/index.htm. Dams-O’Connor, K., Juengst, S.B., Bogner, J., Chiaravalloti, N. D., Corrigan, J. D., Giacino, J. T., Harrison-Felix, C. L., Hoffman, J. M., Ketchum, J. M., Lequerica, A. H., Marwitz, J. H., Miller, A. C., Nakase-Richardson, R., Rabinowitz, A. R., Sander, A. M., Zafonte, R., & Hammond, F. M. (2023). Traumatic brain injury as a chronic disease: Insights from the United States traumatic brain injury model systems research program. Lancet Neurology, 22(6), 517–528. doi: 10.1016/S1474-4422(23)00065-0. Dijkers, M. P., Marwitz, J. H., & Harrison-Felix, C. (2018). Thirty years of National Institute on Disability, Independent Living, and Rehabilitation Research Traumatic Brain Injury Model Systems Center research – An update. Journal of Head Trauma Rehabilitation, 33(6). doi: 10.1097/HTR.0000000000000454.National Academies of Sciences, Engineering, and Medicine (NASEM). (2022). Traumatic brain injury: A roadmap for accelerating progress. Washington, DC: The National Academies Press. doi.org/10.17226/25394.Ramchand, R., Tanielian, T., Fisher, M.P., Vaughan, C.A., Trail, T.E., Batka, C., Voorhies, P., Robbins, M. W., Robinson, E., Ghosh-Dastidar, B. (2014). Hidden heroes: America’s military caregivers. RR-499-TEDF, RAND Corporation.Whiteneck, G., C. B. Eagye, J., Cuthbert, J., Corrigan, J., Bell, J., Haarbauer-Krupa, J., Miller, A. C., Ketchum, J., Hammond, F., Dams-O’Connor, K., & Harrison-Felix, C. (2018). One and five year outcomes after moderate-to-severe traumatic brain injury requiring inpatient rehabilitation: Traumatic brain injury report. Centers for Disease Control and Prevention. https://stacks.cdc.gov/view/cdc/59524#moretextPAmods.subject_namear%20o…. Priority: The Administrator of the Administration for Community Living establishes a priority for a Disability and Rehabilitation Research Project (DRRP) on traumatic brain injury (TBI) as a life-long condition. The DRRP grant to be made under this opportunity will contribute to the evidence base upon which people with TBI and their health care providers can employ effective chronic condition management practices. The primary output of this grant will be new knowledge about tested interventions, services, and supports to address the complex and varied life-long health care needs of people with TBI.The long-term outcomes of the grant, not to be achieved by this grant alone, are decreased mortality and improved long-term health, function, and quality of life for persons with TBI through prevention and/or reduction in the rates of new-onset disease and disability after TBI, and through the provision of rehabilitation services and community-based supports as needed throughout the lifespan.Under this priority, the DRRP must—Conduct at least one research study at the intervention efficacy stage of research. The DRRP may also conduct research at the intervention-development stage. Applicants must justify the need and rationale for research at the proposed stage or stages and describe fully an appropriate methodology or methodologies for the proposed research. Please refer to NIDILRR’s stages of research, which are defined on ACL’s website. Demonstrate in its original application that people with TBI from racial and ethnic minority backgrounds will be included in study samples in sufficient numbers to generate knowledge and products that are relevant to the racial and ethnic diversity of the population of people with disabilities being studied. The DRRP must describe and justify in its original application, the planned racial and ethnic distribution of people with TBI who will participate in the proposed research activities. Conduct knowledge translation activities (i.e., utilization, dissemination) in order to facilitate stakeholder (e.g., people with TBI, service providers, policymakers, practitioners) use of the knowledge, interventions, programs, technologies, or products that result from the research activities conducted under paragraph (a) of this priority. Involve people with TBI and other relevant stakeholders in all research and knowledge translation activities conducted by the DRRP. This involvement will help to maximize the relevance and usability of the knowledge and products to be developed by the DRRP. Ensure that all materials, websites and information technology tools and products that the DRRP plans to develop or maintain are accessible, and that electronic materials are produced in full compliance with Section 508 of the Rehabilitation Act (29 U.S.C. 794d). For websites this compliance currently requires meeting Web Content Accessibility Guidelines (WCAG) 2.0/2.1 AA success criteria. Applications must demonstrate an ability to meet these requirements.