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, 2019a), there were approximately 2.87 million TBI-related emergency department (ED) visits, hospitalizations, and deaths in the United States in 2014, a 53% increase from 2006. These figures are understood to be underestimates of the occurrence of TBIs since they fail to account for people who did not receive medical care, received care as outpatients, or received care at a federal facility. While many people with TBI experience a full recovery, some experience lifelong effects. A conservative estimate of 3.17 million to 3.32 million people in the United States were living with a TBI-related disability in 2005 (Zaloshnia, Miller, Langlois, & Selassie, 2005). Mounting scientific evidence over the last two decades supports the understanding of moderate and severe TBI as a chronic disease. While many definitions of chronic disease appear in the literature, CDC (2019b) offers this: “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.” Analyses of nationally representative data using the NIDILRR TBI Model Systems National Database have shown that moderate to severe TBI increases long-term mortality and reduces life expectancy (Harrison-Felix et al., 2015). Among those with moderate to severe TBI who are alive at 5 years after injury, 57% are moderately to severely disabled; 55% do not have a job (but were employed at the time of injury); and 50% have returned to the hospital at least once (Corrigan et al., 2014). Like many other chronic diseases, TBI is known to be a risk factor for additional disabling conditions. For example, TBI is associated with several neurological disorders such as epilepsy, stroke, seizures, sleep disorders and neurodegenerative diseases such as Alzheimer’s disease and Parkinson’s disease (IOM, 2009; Wilson et al., 2017). In short, for a subset of persons with TBI, the initial injury is the start of a process that effects multiple organ systems and that may be “disease causative and accelerative” (Masel & DeWitt, 2010, p. 1529).
Despite the scientific evidence in support of TBI as a chronic condition, the healthcare system continues to operate under the earlier assumption that TBI is an “event”, and that recovery following TBI is static after improvements have plateaued (Masel & DeWitt, 2010). In contrast, chronic disease management programs have been widely implemented in the fields of diabetes, cardiovascular disease, cancer, and chronic respiratory disease, to name a few. The coordinated long-term care and self-management promoted through disease management approaches have been shown to improve health and to prevent or reduce some of the costly consequences of these chronic conditions. A key component of effective chronic care approaches is the partnership between patient stakeholders and their health care providers, a partnership that promotes active patient management of their health (Coleman, Austin, Brach, & Wagner, 2009; Grover & Joshi, 2014; Reynolds et al., 2018). No such model has been developed to address the chronic health care needs of people with TBI. Through this priority NIDILRR will sponsor research toward the development of a chronic disease management model to improve long-term outcomes of people with TBI.
Centers for Disease Control and Prevention. (2019a). Surveillance Report of Traumatic Brain Injury-related Emergency Department Visits, Hospitalizations, and Deaths—United States, 2014. Centers for Disease Control and Prevention, U.S. Department of Health and Human Services.
Centers for Disease Control and Prevention (2019b). About Chronic Diseases. Retrieved January 31, 2020 from https://www.cdc.gov/chronicdisease/about/index.htm
Coleman, K., Austin, B. T., Brach, C., & Wagner, E. H. (2009). Evidence on the chronic care model in the new millennium. Health Affairs, 28(1), 75-85.
Corrigan, J.D., Cuthbert, J.P., Harrison-Felix, C., Whiteneck, G.G., Bell, J.M., Miller, A.C., Coronado, V.G., & Pretz, C.R. (2014). US population estimates of health and social outcomes 5 years after rehabilitation for traumatic brain injury. Journal of Head Trauma Rehabilitation, 29(6), E1-9.
Grover, A. & Joshi, A. (2014). An overview of chronic disease models: A systematic literature review, Global Journal of Health Science, 7(2), 210-227.
Harrison-Felix, C., Pretz, C., Hammond, F. M., Cuthbert, J. P., Bell, J., Corrigan, J., Miller, A.C. & Haarbauer-Krupa, J. (2015). Life expectancy after inpatient rehabilitation for traumatic brain injury in the United States. Journal of Neurotrauma, 32(23), 1893-1901.
IOM (Institute of Medicine). 2009. Gulf War and Health, Volume 7: Long-term Consequences of Traumatic Brain Injury. Washington, DC: The National Academies Press.
Masel, B. E. & DeWitt, D. S. (2010). Traumatic brain injury: A disease process, not an event. Journal of Neurotrauma, 27(8), 1529-1540.
Reynolds, R., Dennis, S., Hasan, I., Slewa, J., Chen, W., Tian, D., Bobba, S., & Zwar, N. (2018). A systematic review of chronic disease management interventions in primary care. BMC Family Practice, 19, 11. https://doi.org/10.1186/s12875-017-0692-3
Wilson, L., Stewart, W., Dams-O’Connor, K., Diaz-Arrastia, R., Horton, L., Menon, D.K., & Polinder, S. (2017). The chronic and evolving neurological consequences of traumatic brain injury. Lancet Neurology, 16(10), 813-825.
Zaloshnia, E., Miller, T., Langlois, J.A., & Selassie, A. W. (2008). Prevalence of long-term disability from traumatic brain injury in a civilian population of the United States, 2005. Journal of Head Trauma Rehabilitation, 23(6), 394-400.
Priority--DRRP on Chronic Disease Management for People with Traumatic Brain Injury (TBI):
The Administrator of the Administration for Community Living establishes a priority for a Disability and Rehabilitation Research Project (DRRP) on Chronic Disease Management for People with traumatic brain injury (TBI). The 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 disease management practices. The grantee will conduct research at the intervention-development stage to develop a chronic disease management model for meeting the complex and varied health care needs of people with TBI. Please refer to NIDILRR’s stages of research, which are defined below in this section of the funding opportunity announcement. The primary output of this grant will be foundational knowledge toward the development, testing, and implementation of a chronic disease management model for people with TBI and their health care providers. The long-term outcomes of the grant, not to be achieved by this grant alone, are decreased mortality and improved 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. To help ensure the relevance of the research-based knowledge generated by this grant, stakeholders must be substantially involved in the design and implementation of research and dissemination activities. Under this priority, the DRRP must contribute to the following outcomes.
a. New knowledge and information about potential characteristics of evidence-based chronic disease management models for people with TBI. To contribute to this outcome, the DRRP must: i. In the first year of the grant, conduct systematic research to identify evidence-based chronic disease management models implemented with people experiencing other potentially disabling illnesses or injuries. This research should be based upon a broad review of the literature, including: a. The knowledge, skills and supports that have been demonstrated to facilitate effective chronic disease management; b. A systematic compilation of the common elements present across effective chronic disease management models; c. The essential clinical protocols needed to implement a disease management program and the measurement tools required to assess its effectiveness; d. The community-based supports needed throughout the lifespan of a person with TBI; and e. A review of the sustainability of components of effective chronic disease management. ii. In the first year of the grant, conduct systematic research to identify the barriers to and modifications required for implementation of the model characteristics identified in (a)(1) – among people with TBI. iii. Based on the information identified in (a)(i) and (ii), develop a chronic disease management model for people with TBI. b. New knowledge about the active components of the model, feasibility of applying the model, needed measures to illustrate outcomes of the model, sustainability of the model, and other details about the model developed under (a)(iii). To contribute to this outcome, the DRRP must conduct initial field tests focusing on one or more component(s) of the proposed model, and use the results of the research to inform revisions to the model.c. New knowledge among people with TBI, health care providers, and policy makers about the characteristics of the emerging chronic disease management model for people with TBI. To contribute to this outcome, the DRRP must provide extensive dissemination, and must promote knowledge of the model among key stakeholders. Over the course of this grant, the dissemination must be increasingly based on the knowledge base generated by the grant.
Definition: Stages of Research
(a) Exploration and discovery means the stage of research that generates hypotheses or theories by conducting new and refined analyses of data, producing observational findings, and creating other sources of research-based information. This research stage may include identifying or describing the barriers to and facilitators of improved outcomes of individuals with disabilities, as well as identifying or describing existing practices, programs, or policies that are associated with important aspects of the lives of individuals with disabilities. Results achieved under this stage of research may inform the development of interventions or lead to evaluations of interventions or policies. The results of the exploration and discovery stage of research may also be used to inform decisions or priorities.
(b) Intervention development means the stage of research that focuses on generating and testing interventions that have the potential to improve outcomes for individuals with disabilities. Intervention development involves determining the active components of possible interventions, developing measures that would be required to illustrate outcomes, specifying target populations, conducting field tests, and assessing the feasibility of conducting a well-designed interventions study. Results from this stage of research may be used to inform the design of a study to test the efficacy of an intervention.
(c) Intervention efficacy means the stage of research during which a project evaluates and tests whether an intervention is feasible, practical, and has the potential to yield positive outcomes for individuals with disabilities. Efficacy research may assess the strength of the relationships between an intervention and outcomes and may identify factors or individual characteristics that affect the relationship between the intervention and outcomes. Efficacy research can inform decisions about whether there is sufficient evidence to support “scaling-up” an intervention to other sites and contexts. This stage of research can include assessing the training needed for wide-scale implementation of the intervention and approaches to evaluation of the intervention in real world applications.
(d) Scale-up evaluation means the stage of research during which a project analyzes whether an intervention is effective in producing improved outcomes for individuals with disabilities when implemented in a real-world setting. During this stage of research, a project tests the outcomes of an evidence-based intervention in different settings. It examines the challenges to successful replication of the intervention and the circumstances and activities that contribute to successful adoption of the intervention in real-world settings. This stage of research may also include well-designed studies of an intervention that has been widely adopted in practice, but that lacks a sufficient evidence-base to demonstrate its effectiveness.