Lost in Translation: A Call to Action Addressing the Disparities in Postinjury Rehabilitation for Community-Dwelling Survivors of Traumatic Brain Injury

Traumatic brain injury (TBI) is the leading cause of death and disability among all trauma-related injuries in the United States (U.S.; Center for Disease Control [CDC], 2019). Despite being a rising public health concern, there remain considerable treatment disparities between survivors’ rehabilitation needs and service provision. Falls and motor vehicle accidents are leading causes of TBI within the U.S. (CDC, 2019), including among the survivors of TBI who live in community settings outside of medical and military facilities, the largest population of survivors (Vanderploeg et al., 2019). Despite the high incidence of community-dwelling TBI, disproportionate empirical attention is provided to athlete, military, and veteran populations. For example, armed service members are eligible to receive community-integrated rehabilitation services across the 21 defense and veterans brain injury centers in the U.S., and greater public focus is provided to sports-related TBI in pediatrics relative to fall-related TBI in older adults (Taylor et al., 2017).

TBI may result in disturbances in cognition, emotion, behavior, and physical functioning, yet symptoms related to cognitive and affective sequelae may be underlying chronic difficulties in successful adaptation. TBI symptoms can impact reintegration into school, work, and social domains, areas salient to community-dwelling survivors. Many survivors report post-concussive symptoms (e.g., memory difficulties) that may resolve within three months to a year (Belanger et al., 2005). However, half of the cases may experience persistent symptoms for years following the injury(Theadom et al., 2019). Patients with TBI, psychiatric complaints, and impaired cognitive functioning at discharge are at the highest risk of long-term unemployment.

The U.S. unemployment rates among TBI survivors two years post-injury may be as high as 60% for full-time unemployment and 35% for part-time employment (Cuthbert et al., 2015). TBI is a chronic, life-long condition increasingly conceptualized as a disease process rather than a discrete injury, given its irreversible sequelae (Masel & DeWitt, 2010) and its association with adverse outcomes such as homelessness (Stubbs et al., 2019), incarceration (Durand et al., 2017; Schofield et al., 2015), and substance abuse (Center for Substance Abuse Treatment, 2010; Corrigan et al., 2012). Consequently, survivors face the possibility of mismanaged symptoms following emergency department discharge, given a reduction in the length of time monitored by physicians (CDC, 2019). Currently, unstandardized assessment complicates identification, symptom management, and rehabilitation outcomes.

TBI Assessment

Correctly and comprehensively identifying the source and impact of TBI-induced deficiencies is critical. TBI is accompanied by a breadth of neurologic signs and symptoms, which are captured using medical and psychiatric classification systems. Medically, TBI is classified from mild to moderate to severe according to loss of consciousness and post-traumatic amnesia (CDC, 2019).  This classification system does not capture the range of neurobehavioral symptoms experienced. For instance, survivors with mild and severe TBI may express similar affective and cognitive symptom profiles, even though they may be categorized on opposite ends of the severity spectrum (Ruttan et al., 2008). Additionally, measuring severity is unstandardized and is currently accomplished by using a variety of assessments (e.g., OSU-TBI ID, BSIQ, Glasgow Coma Scale). This measurement variability has affected current TBI incidence estimates. Regrettably, 20% to 30% of the estimated two and a half million emergency department visits that were classified as unspecified head injury had sufficient evidence to fit a formal TBI diagnosis (CDC, 2019).

In addition to the medical categorizations (i.e., mild, moderate, severe), there are mental health categorizations that may better describe associated functional deficits. These include mild and major neurocognitive disorder due to TBI (American Psychiatric Association [APA], 2013). In addition to cognitive complaints, survivors may also experience affective symptoms including emotional dysfunction, changes in personality or mental health problems such as post-traumatic stress, depression, or anxiety (Arciniegas & Wortzel, 2015). Estimates of depression and anxiety among survivors are approximately 61% and 70%, respectively, with co-occurrence in approximately 75% of cases (Ponsford et al., 2016).  Further, affective and cognitive symptoms can influence each other, complicating the ability to effectively treat symptoms. This relationship is a dysfunctional feedback loop, such that cognitive symptoms co-occur with pain or emotional factors, which engender secondary cognitive complaints (Kay et al., 1992). Observable disparities in empirical definitions and assessment of the condition across the literature have created an impending need for reliable and evidence-based treatments to inform clinical practice guidelines.

TBI Treatment

Many existing medical interventions for TBI (e.g., steroids, surgery) can be invasive and may cause side-effects that complicate a survivor’s overall health (Triebel et al., 2012). Other TBI treatment strategies include psychotherapeutic treatments and cognitive rehabilitation, which could facilitate neuroplasticity. However, the reflexive relationship between affective and cognitive symptoms complicates standard-bearing traditional psychotherapy and cognitive rehabilitation techniques. For example, modifying emotional responses may affect the motivation that influences fundamental cognitive abilities (Kay et al., 1992) and, conversely, altering fundamental cognitive abilities may influence emotional processing by influencing the perception of or modulating the salience of environmental stimuli (Ignacio, 2016).

Cognitive deficiencies impede independence, necessary lifestyle changes, and may promote a loss of sense of self through changes resulting from the TBI, which contribute to feelings of depression, anxiety, or post-traumatic stress symptoms (Kaup et al., 2019). For example, a lack of improvement in psychiatric concerns, but improvements in cognitive measures would suggest that cognitive rehabilitation interventions may not generalize to domains other than cognition, and cognitive symptoms may be linked to associated stressors instead of the injury itself (Julien et al., 2017). Thus, a best practice may be to target affective and cognitive domains jointly in vocational rehabilitation for community-dwelling survivors. Although the Ontario Neurotrauma Foundation (2018) has published clinical practice guidelines, there is minimal consensus of how to approach standardized rehabilitation following TBI of any severity, specifically within the U.S. Further research is needed to address these treatment concerns and accurately inform the scientific community to ultimately guide public policy and reform.

Policy Implications and Future Directions

There is variability in U.S. legislative policies, specifically for standardized clinical practice guidelines, which is a major factor in TBI treatment disparities. With a few exceptions, most of the U.S. lacks standardized treatment practices for TBI assessment and treatment. Developing standards of care for TBI will assist to reduce treatment disparities and poor functional outcomes for community-dwelling survivors. At medical discharge, survivors may not have any integrative support promoting mismanaged symptoms (Lamontagne et al., 2018). To rectify this, a referral-based system that survivors can interact with online, in-person, or over the phone could adequately address rehabilitation needs based on demographics and injury characteristics (e.g., severity). For instance, there is a network of seven sites across the state of California that is grant funded by the Department of Rehabilitation to serve survivors of TBI and their families; however, each site receives a fixed amount to serve a large catchment area, which restricts provision of services and limits the impact of community-integration practices.

Supporting integrated state-wide registries to improve high-quality data on real-time incidence may encourage a standardized pipeline of the recovery process with appropriate rehabilitation referrals. This would adequately fund service-providers to facilitate successful community reintegration. Several states have attempted to accomplish this with varying degrees of success. For example, Maryland has a law that mandates medical centers to provide incidence data on TBI but does not provide funding or enforcement to do so, whereas Alabama maintains an integrated data registry with limited funding. California’s TBI Advisory Board also does not have a dedicated data registry, but for a different reason than Maryland, and is loosely connected to their state’s designated trauma registry; whereas, Virginia’s TBI board is integrated. Moreover, rehabilitative services (e.g., adult day care, cognitive rehabilitation, home accessibility modifications, respite, supported employment) are provided through a Medicaid sponsored Home and Community-Based Services (HCBS) waiver. Several states with high a concentration (>30%) of rural communities currently do not provide HCBS waivers to their citizens (e.g., South Dakota, Oklahoma, Arkansas, North Carolina; NASHIA, 2014; U.S. Census Bureau, 2016).

Variability in operational definitions, physical versus neurocognitive symptoms, and varying ability to collect high-quality empirical data on incidence has restricted the ability to derive meaningful findings and provide directed care to these survivors of trauma, particularly those who are experiencing post-concussive symptoms along with mental health comorbidities. When evaluating potential treatments for inclusion in treatment standards, particular attention needs to be placed on co-occurring problems associated with TBI (e.g., homelessness) As much as 53% of the homeless population is estimated to have a history of TBI, and a subset of approximately 70% of these individuals is estimated to have had their TBI prior to the onset of homelessness (Stubbs et al., 2009). Many of the previously described symptoms of head injury are the leading risk factors for homelessness, both of which have been empirically associated with adverse health outcomes such as schizophrenia, drug misuse, suicidal ideation, and a higher incidence of psychiatric diagnoses (Stubbs et al., 2019). Collectively, these problems have contributed to treatment disparities salient to TBI that, at present, have promoted mismanaged symptoms, thus leading to poorer prognoses for comprehensive recovery among community-dwelling survivors.

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Correspondence for this article can be made to St. Jude Brain Injury Network at daniel.ignacio2@stjoe.org or (714) 732-1097.