TARGET GOALS AND OUTCOMES OF CARE

When a TBI patient transitions to the post-acute phase of care, clinical outcomes different from those of the acute care phase become important. While the initial focus of TBI care is on sustaining life and minimizing secondary damage to the brain, post-acute care focuses on the optimization of a person’s day-to-day function and the ability to return to community living. In addition, treatment during these later phases of care aims to minimize post-TBI complications, the development of adverse sequelae, and negative interactions between the effects of TBI and any comorbidities the person may have.

While evidence indicates that earlier initiation of rehabilitation for TBI results in the greatest improvements in function, even patients who start rehabilitation therapy later after injury can still make tremendous strides in recovery. Box 6-1 conceptualizes target outcomes in the immediate, medium, and long terms after acute care.

BOX 6-1

TARGET OUTCOMES FOR PERSONS WITH TBI IN THE IMMEDIATE, MEDIUM, AND LONG TERMS.

CURRENT CARE PATHWAYS AFTER ACUTE TBI CARE

Multiple care pathways are possible after a person experiences a TBI. Ideally, the course of treatment would be based on the initial severity of the TBI and any other sustained injuries, how those injuries developed or changed over time, and how the injuries affected the person’s capacity for self-care. The sections below describe the types of facilities that provide rehabilitation and longer-term care after the acute phase of care (see Chapter 5).

Overview of Civilian and Military Care Pathways

For civilians, the care pathway experienced by TBI patients is strongly influenced by whether they underwent an initial hospital-based evaluation. For those who start their care pathway with hospital-based treatment, acute rehabilitative services may begin within 24–72 hours of injury. Subsequent stages of the journey can involve referrals to different types of care facilities, including additional inpatient rehabilitation, outpatient rehabilitation, nursing homes, and residential care facilities (see Box 6-2). Patients with severe injuries may be referred to a long-term acute care hospital or to inpatient rehabilitation followed by support services that allow them to return to the home environment, and/or may be transferred to a nursing home or residential care facility. Meanwhile, patients returning to home may receive further in-home or outpatient rehabilitation with physician follow-up. For those who start their care pathway without hospital-based treatment, the type and extent of follow-up are highly variable. Some individuals with TBI may never see a health care provider for evaluation of their injury, while others may be evaluated and referred for additional post-TBI rehabilitation or follow-up.

BOX 6-2

SELECTED TYPES OF CARE FACILITIES FOR PATIENTS WITH TBI.

In the military, the Joint Trauma System (JTS) organizes and delivers trauma care. For service members who experience a TBI in combat theater, there are five levels or “roles” of care, each with progressively greater resources and capabilities: on-site treatment by initial field responders (role 1), surgical resuscitation by forward emergency medical care teams (role 2), treatment at combat support hospitals (role 3), and off-theater evacuation to definitive care facilities (roles 4 and 5).¹ Unique challenges faced by military trauma services include the frequency of blast-related injuries, the likelihood of patients having severe multisystem injuries (multitrauma), the complexity of providing care in a combat environment, and the provision of care that can be discontinuous across locations and time as service members are transferred across JTS roles rather than being housed within a single trauma center (NASEM, 2016). Post-acute and rehabilitative services for service members and Veterans with TBI are provided through Department of Veterans Affairs (VA) centers.

Even with these differences, the civilian and military care pathways for the post-acute and recovery stages after TBI encompass a generally similar range of inpatient and outpatient care settings and potential types of rehabilitation interventions. However, access to care may vary between the two systems. Veterans with TBI are able to access care through the VA Polytrauma System of Care, whereas in the private sector, civilians may experience substantial care gaps and difficulty accessing rehabilitation services (discussed later in this chapter).

Types of Rehabilitation Interventions

Persons with TBI experience a variety of new or persisting symptoms, and multiple interventions may be provided to address their cognitive, sensory, behavioral, and physical difficulties and support their recovery. The process of preparing a person with TBI to return to independent functioning often begins in the acute care setting, and the use of practice guidelines and standardization along all phases of the care continuum is receiving increased emphasis (see Box 6-3). Such guidelines aid therapists in homing in on specific treatment components to better support the individual patient’s recovery. It is increasingly recognized that rehabilitation should start with asking patients what matters to them. In addition to addressing the patient’s symptoms and health conditions, care is enhanced by asking questions regarding personal goals and other non-health-related objectives. Functional training that is patient-centered and context-relevant is thought to be most likely to engage the patient and facilitate generalization to the home setting (Bogner et al., 2019b).

BOX 6-3

GUIDELINES INFORMING REHABILITATION CARE FOR TBI.

Examples of the variety of therapies and interventions provided after TBI are briefly described below. As noted, functional rehabilitation after TBI needs to be patient-centered and relevant to the person’s context, and rehabilitation clinicians combine components of treatment into strategies designed to address the person’s specific functional needs. Guides such as the Manual for Rehabilitation Treatment Specification (Hart et al., 2018) provide advice on the targets, mechanisms of action, and design of rehabilitation treatment programs for patients.⁶

Overall, many questions remain regarding which patients will benefit from which rehabilitation interventions and when and how to use them to optimize outcomes. Research in this area has been hampered by inconsistencies in definitions of injury severity, limited durations of follow-up, and the heterogeneity of TBI. Patients may also receive multiple types of therapies, making it challenging to assess the effects of any one type of intervention. Assessments of progress need to consider not only how a person is improving at a certain task in the therapy setting, but also whether the person is acquiring strategies that can be applied to contexts that are most relevant to that individual’s daily settings. For example, people with more subtle effects from mild TBI may realize a need for services when they reencounter complex tasks requiring high levels of executive functioning or multitasking as part of daily living.⁷ As advances in tools and knowledge are achieved, translating this knowledge rapidly and broadly beyond the research arena remains a challenge.

Rehabilitation Therapies

Examples of therapies for persons recovering from TBI are listed below. As with so many aspects of TBI care, whether patients receive a particular type of treatment and for how long on average they receive it per week are variable.

• Cognitive rehabilitation therapy focuses on restoring cognitive function through interventions or tools designed to improve memory, focus, and other cognitive skills. Neuropsychological assessments can be used to identify treatment targets and strengths that can be leveraged to optimize function.
• Speech-language therapy aims to treat difficulties with communication and language, including reading, speaking, and pragmatic communication, as well as other challenges involving movement of the tongue, mouth, and throat, such as difficulty swallowing.
• Physical therapy is focused on improving movement, reducing pain, and otherwise managing issues associated with mobility, balance, gait, and strength, including use of assistive devices such as canes and wheelchairs.
• Occupational therapy is directed at increasing a person’s ability to participate in everyday activities, including such activities of daily living as grooming and dressing; to engage in meaningful activities; and to reintegrate within the community.
• Vocational rehabilitation provides services to facilitate a person’s ability to work or return to work, and can include such services as training and job coaching. Supported employment can also be used to assist a person with significant disabilities in holding or maintaining employment to the maximum extent of their abilities.
• Psychotherapy and behavior therapy assist with cognitive, emotional, behavioral, and social-environmental challenges or barriers to community participation and adjustment to disability.

Symptom Management

No Food and Drug Administration (FDA)-approved pharmaceutical treatments are available for TBI recovery; however, care can be aimed at mitigating or managing symptoms and addressing modifiable factors associated with TBI sequelae, including sleep, pain, nutrition, and mental health. A significant proportion of people with TBI—including 30–70 percent of people who experience a “mild TBI”—experience sleep disturbances (Viola-Saltzman and Watson, 2012). For these patients, “good sleep hygiene,” use of medications for insomnia, treatments to reduce sleep apnea, and other interventions may be used during recovery. Significant numbers of people with TBI also report headaches, pain, dizziness, and other concerns that may be mitigated with medication, as well as nonpharmaceutical approaches. Modifying or structuring the person’s environment and implementing new cognitive strategies are examples of strategies that can be used to help accommodate some types of post-TBI symptoms.

Interactions with Physiological Systems

A noted previously, TBI patients frequently experience multisystem trauma, complicating their treatment requirements. Because the brain and central nervous system play important roles in other body systems, TBI can lead to metabolic and endocrine dysfunction (Li and Sirko, 2018). Apart from the effects of other injuries, brain injury causes inflammation, and the duration of post-TBI inflammation and its effects on brain and body functions continue to be investigated (Irvine and Clark, 2018; Schimmel et al., 2017). Drugs that have anti-inflammatory properties or modulate inflammatory responses may prove useful and are being investigated as well (Begemann et al., 2020). The brain and central nervous system also communicate with cells in the gut (the “gut–brain axis”). The gut microbiome is an important source of neurotransmitters, but little is known about how this relates to brain function in TBI (Opeyemi et al., 2021).

Complementary and Integrative Health Approaches

VA-approved whole-health complementary and integrative approaches for treatment of health and well-being issues for Veterans include acupuncture, biofeedback, clinical hypnosis, and massage therapy, while approved approaches for well-being include meditation, guided imagery, Tai Chi, Qigong, and yoga.⁸ A current area of focused analysis of the outcomes of these approaches has been chronic pain, including its impact on opioid use and mental health challenges, such as depression. Evaluation of the potential benefits of such whole-health interventions for patients with TBI may be a focus area for future research.

Self-Help and Empowerment

Patients can benefit from guidance on what to expect in the future and advice on such pragmatic questions as when they will be able to drive again and when to seek further assistance should sequelae develop or change. Enhancing self-efficacy while the person is in the hospital and supporting the person’s ability to self-advocate may improve near- and long-term outcomes (Hawley et al., 2021).

Family and Caregiver Involvement in Rehabilitation

Research, albeit limited, suggests that family engagement in rehabilitation is associated with better patient outcomes. For example, one study found that “family involvement during inpatient rehabilitation may improve community participation and cognitive functioning up to 9 months after discharge” (Bogner et al., 2019a, p. 1801). In this sample of 1,835 patients during a first-time inpatient TBI rehabilitation stay, patients whose family members attended at least 10 percent of therapy sessions were significantly more engaged in their communities at 3 and 9 months after discharge compared with those whose families attended less than 10 percent of sessions. Although not meeting statistical significance in all analyses, improved cognitive functioning at 9 months was associated with increased family attendance. The benefits of family involvement were echoed in a qualitative study of 20 TBI survivors in Denmark, who described the importance of family involvement in their TBI care and reported that family support was crucial to their recovery in terms of navigating the health care system and coordinating rehabilitation (Graff et al., 2018). According to these studies, patient and family/caregiver engagement is at the heart of care that transitions patients successfully back into society.

New Types of Therapies and Interventions

New treatment approaches supporting rehabilitation and recovery after TBI continue to be explored. Increasing evidence supports the use of such therapies as vestibular and vision therapy and earlier initiation of heart-rate-targeted exercise in managing concussion (Leddy et al., 2018; Mucha et al., 2018). Repetitive transcranial magnetic stimulation (rTMS) is being investigated for its potential to reduce posttraumatic depression and cognitive deficits. Current evidence in support of rTMS is based primarily on studies with rats, however, and the limited human studies have shown mixed results (Nardone et al., 2020). Research has also investigated the use of rTMS to reduce such symptoms as headache, overall pain, depressive symptoms, and problems with executive function following mild to severe TBI, with mixed results (Anderson et al., 2020). Few studies have examined outcomes beyond 6 weeks, and they did not find significant differences from controls. Other neuromodulation therapies under study for treatment after TBI include transcranial direct current stimulation, epidural electrical cortical stimulation, and deep brain stimulation (Hofer and Schwab, 2019).

Discharge Planning and Communication with Patients and Their Families and Caregivers

The sequelae of TBI can have a profound impact not only on the injured person but also on the person’s family and caregivers. It is estimated that 5.3 million people in the United States live with brain injury–related disabilities,⁹ and that 2.5 million military and civilian families and caregivers are caring for a person with TBI (Malec et al., 2017). Family members and caregivers of persons with TBI have been described both as “hidden victims” because they report significant stress and burden, and as the “hidden heroes” of TBI because the support and care they provide is critical for their loved ones (Ramchand et al., 2014).

Planning for discharge and for longer-term TBI management needs to begin in advance of the person’s return home, with close involvement of the family and caregivers. Patients requiring inpatient care often remain hospitalized for only a few weeks, and this may not be sufficient time to educate patients and their families/caregivers about the experiences they will face after returning home. Care organizations and providers thus need to pay attention to the importance of communication with all individuals involved to prepare them for postdischarge care needs. Some health systems offer support groups for families/caregivers while patients are in the hospital, but in many cases, there is no streamlined continuation of support postdischarge. A variety of educational materials and resources have been published to help persons with TBI and their families and caregivers understand the injury, the potential course of recovery, and longer-term management of the condition (see Box 6-4).

BOX 6-4

EXAMPLES OF EDUCATIONAL MATERIALS AND RESOURCES ON TBI.

Not all patients and families may be aware of the available high-quality resources; some may have difficulty accessing them online, or materials may not be available in multiple languages. More than half of participants in one survey of people with TBI and their families reported not receiving sufficient information on the nature and consequences of the injuries (Biester et al., 2016). Culturally resonant messaging about care trajectories, potential complications, and resources are also lacking. Data are currently limited on which dissemination strategies can best achieve the goal of educating and empowering patients and families with respect to the care needed upon discharge, and their preferences for consumption of information remain largely unknown.

LONG-TERM AND COMMUNITY-BASED SERVICES

After discharge from health care settings, persons with TBI and their families commonly need access to a variety of services, depending on the nature of the injury and anticipated longer-term functional outcomes.

LONG-TERM CARE FOR TBI AS A CHRONIC CONDITION

The past decade has seen a shift from the assumption that persons with TBI achieve a lifelong plateau following an initial period of recovery to recognition of the reality, first identified by Masel and DeWitt (2010), that a substantial portion of individuals experience late effects and evolving status. In some cases, patients experience recovery that is greater than initially expected, while in other cases, patients experience decline. As reported by Whiteneck and colleagues (2018, p. 5), “almost half of individuals experienced a change in their cognitive function between 1 and 5 years post-injury, with 24% improving and 24% declining.” Long-term outcome studies of persons with moderate to severe TBI have similarly shown that about one-third decline after previously reaching a plateau (Corrigan and Hammond, 2013).

Functional decline and increased risk of later mortality have been observed after moderate to severe TBI, while findings after mild TBI appear to be sample dependent and possibly associated with preexisting lifestyle factors (Wilson et al., 2017). However, evidence suggests that even a single TBI can increase the risk for subsequent neurodegenerative disorders and stroke (Postupna et al., 2021; Smith et al., 2021). In addition, “injury to the brain can evolve into a lifelong health condition termed chronic brain injury (CBI). CBI impairs the brain and other organ systems and may persist or progress over an individual’s lifespan. CBI must be identified and proactively managed as a lifelong condition to improve health, independent function and participation in society” (Corrigan and Hammond, 2013, p. 1199¹²). Recommendations from a consensus conference on this issue included the need for a disease management approach; further studies to identify those at greatest risk for decline; self-management training, including encouraging healthy behaviors; and periodic resumption of rehabilitation (Corrigan and Hammond, 2013).

The Role of Care Management

Navigating the complex and fragmented landscape of longer-term health and community services is daunting for people with TBI and their families and caregivers. Patient-centered case managers or care navigators can reduce this barrier by providing patients and families with valuable assistance in accessing care, and by educating providers in how to adapt their services to the unique needs of the person with TBI. A health care provider with expertise in the needs of persons with TBI can also continue to provide long-term follow-up for emerging needs. Unfortunately, many persons living with TBI and their families lack access to either a person-centered case manager or a provider who can offer ongoing follow-up care. Box 6-5 describes an example developed in the context of dementia to illustrate how this type of role might function for TBI. A study is currently examining the effectiveness for TBI patients and their families of a standard discharge plan compared with a plan providing follow-up and care management (by phone or video) from a TBI care manager for 6 months and 1 year after discharge (Fann et al., 2021). The investigators’ hypothesis is that improving the transition from inpatient to outpatient care will support better results for patients and families.

BOX 6-5

THE CARE ECOSYSTEM MODEL.

Resource facilitation models have also been developed for persons with TBI, and a variety of terms have been used to describe programs aimed at addressing this need. Resource facilitation connects persons with TBI with services and supports to assist in their recovery and reintegration. Such programs draw on a resource facilitator to assist the person and family in identifying and navigating resources and in problem solving, as well as a team of rehabilitation specialists. Trexler and colleagues (2010) conducted one of the first RCTs of the effectiveness of a resource facilitation program for TBI, which demonstrated improved return to work for participants receiving this support.

ADDRESSING NEEDS OF SPECIFIC TBI POPULATIONS

UNMET FAMILY AND CAREGIVER BURDENS

When people with TBI live with their families, as most do, family members often experience psychological distress, especially depression, and high levels of caregiver burden (Dillahunt-Aspillaga et al., 2013; Moriarty et al., 2016; Stevens et al., 2012). In one study, for example, 45 percent of family members of Veterans with TBI reported clinically significant levels of depressive symptoms (Moriarty et al., 2018). In addition to depression, family members may experience anxiety (Kreutzer et al., 1994, 2009; Nabors et al., 2002; Ponsford et al., 2003; Riley, 2007), social isolation (Marsh et al. 1998a,b, 2002; Romano, 1974), caregiver burden (Knight et al., 1998; Kreutzer et al., 1994; Marsh et al., 1998a), diminished quality of life (Verhaeghe et al., 2005), worse perceived health (McPherson et al., 2000), and financial distress (Riley, 2007). TBI also contributes to dysfunction and conflict in families (Bay et al. 2012; Ergh et al., 2002; Groom et al. 1998; Kreutzer et al. 1994), as well as communication (Tyerman and Booth, 2001) and marital problems (Peters et al., 1990). Family members often report that behavioral and emotional changes are the most difficult TBI-related symptoms for them (Ergh et al., 2002). These changes may cause family members to experience ambiguous loss—their loved one with TBI is alive, but the person they knew has been lost (Boss, 2005; Landau and Hissett, 2008). As one family member expressed it, “[he] was not the man that I had sent off to war, it was not the man who loved his children and loved being with them.”²⁰

Research has often focused on family caregivers of civilians with TBI, but research centered on family caregivers of Veterans with TBI is increasing (e.g., Griffin et al., 2017; Moriarty et al., 2016; Shepherd-Banigan et al., 2018; Winter and Moriarty, 2017). Family members of Veterans with TBI may be more vulnerable to caregiver stress relative to civilian families because stress from multiple and lengthy deployments had preceded the Veteran’s return home (Dausch and Saliman, 2009; Stevens et al., 2017). In addition, Veterans with TBI often have other conditions, such as posttraumatic stress disorder (PTSD), depression, pain, and polytrauma, that may increase the family’s vulnerability to stress (Hoge et al., 2008; Nampiaparampil, 2008; Tanielian et al., 2008).

A number of studies have shed light on the needs of families of TBI survivors. Family members have identified many unmet needs, particularly for emotional and instrumental support (Kreitzer et al., 2018; Norup et al., 2015). Family caregivers have frequently reported becoming socially isolated and being left on their own to support their loved ones with TBI and themselves.²¹ The heavy toll imposed by the caregiving role may lead to family disintegration, with loss of this major source of support for the person with TBI (Kolakowsky-Hayner et al., 2001). The “emotion work” described by family care partners of Veterans with TBI encompasses “creating a new ‘normal,’” “keeping things calm,” and suppressing their emotions “to put on a brave face” (Abraham et al., 2021, p. 27). This intangible and often invisible work is typically not appreciated by others. Acknowledging and supporting family members around emotion work is an important and new direction for future practice and research. Family members also often struggle with high levels of burden from caregiving demands (Baker et al., 2017). In a scoping review of 21 intervention studies for TBI caregivers, Baker and colleagues (2017) concluded that interventions targeting family coping skills and functioning reduced the burden of care.

Recognizing TBI as a family affair, literature has underscored the need for interventions for both patient and family (Boschen et al., 2007; Foster et al., 2012; Kolakowsky-Hayner et al., 2001; Moriarty et al., 2016; Stejskal, 2012). However, a limited number of studies have evaluated family-inclusive interventions using rigorous methodology, and few evidence-based practice models that consider the needs of both patient and family have been identified as best treatments (Boschen et al., 2007; Verhaeghe et al., 2005). Although some interventions for TBI caregivers show promise, more research is needed to demonstrate their effectiveness in improving caregivers’ mental health and quality of life, as well as outcomes for the person living with TBI.²²

In their review, Boschen and colleagues (2007) identify only four intervention studies designed to reduce caregiver distress and conclude that no evidence exists to support the usefulness of any one psychosocial intervention for family caregivers of persons with TBI. A later review article (Kreitzer et al., 2018) concludes that few rigorous intervention studies have included the person with TBI and a family member or solely a family member. In one RCT with family caregivers of persons with TBI, Rivera and colleagues (2008) evaluated the impact of problem-solving training (PST) delivered through four in-home sessions and eight telephone sessions over 1 year and informed by cognitive-behavioral therapy. Compared with caregivers in the education-only control group, family caregivers in the PST group reported significant decreases in depression, health complaints, and dysfunctional problem-solving style but no significant change in burden.

In another RCT, Backhaus and colleagues (2010) examined the effect of a 12-session cognitive-behavioral intervention that delivered psychoeducation, supportive psychotherapy, stress management, and problem-solving strategies for 20 persons with acquired or traumatic brain injury and their 20 respective family caregivers. Intervention participants showed a significant increase in perceived self-efficacy immediately posttreatment and at the 3-month follow-up compared with controls, but no significant difference in psychological distress. Findings were not described separately for the TBI survivors and family members.

Another RCT involving patients with TBI and family members found significant benefits of peer mentorship for both, including increased behavioral control and positive coping and better quality of life for patients, and increased community reintegration for family members (Hanks et al., 2012).

Finally, a more recent RCT (Moriarty et al., 2016) evaluated the effect of the Veterans’ In-home Program (VIP), an in-home intervention for Veterans with TBI and their families. Veterans in VIP showed significantly increased community reintegration and ability to manage patient-identified TBI-related problems compared with controls who received usual clinic care (Winter et al., 2016a,b. Family caregivers in VIP experienced significantly fewer depressive symptoms and less burden compared with controls (Moriarty et al., 2016; Shepherd-Banigan et al., 2018).

Overall, gaps in knowledge needed to address unmet family and caregiver needs include the following:

• What are the most effective interventions to support family caregivers during the acute, post-acute, and chronic stages of TBI?
• How do family caregivers’ characteristics, such as preinjury mental health, socioeconomic factors, and cultural beliefs, contribute to the effectiveness of interventions designed to support them?
• What are the predictors of physical health, mental health, and well-being in family caregivers?
• What naturally existing systems of support can facilitate family caregivers’ coping with the daily demands of caring for someone with TBI?
• How can families be systematically engaged in post-acute rehabilitation? And what are the effects of this engagement on important outcomes for the person with TBI and family members?
• How can existing resources for family caregivers be disseminated widely in ways that make them available to caregivers at their time of need?

UNMET NEEDS IN THE CURRENT SYSTEM OF TBI REHABILITATION AND LONG-TERM CARE

Unfortunately, many factors interfere with an individual’s ability to access an ideal care pathway after TBI, and these factors will have to be addressed if post-acute TBI care and outcomes are to be improved.

Barriers to rehabilitation and recovery include fragmented and variable care and the need for greater communication and continuity along the care continuum. Patients with TBI and their families need integrative, interdisciplinary treatment across the continuum of care and recovery, with care needs that may continue over a long period of time. In the military, continuity of care is improved by the fact that longer-term and rehabilitation care for service members and Veterans with TBI can be provided through the VA Polytrauma System of Care. As discussed in prior chapters, however, care systems in civilian populations are often fragmented. Moreover, as this chapter has laid out, the course of recovery can change, and challenges can arise after a person with TBI returns home; therefore, patients and families need pathways for accessing follow-up or additional support if needed.

Additional barriers to optimal rehabilitation and long-term care include difficulties in accessing the necessary expertise within one’s geographic area, and other social determinants of health that significantly influence many health outcomes. A growing body of research has examined the relationship of these factors to rehabilitation access and utilization and to outcomes after TBI. As discussed in detail in Chapter 3, factors that affect TBI care and outcomes include not only geographic location, but also race and ethnicity and economic circumstances, such as unemployment, lack of health insurance, limitations in coverage, and high financial costs that are difficult for patients and families to bear on their own.

Finally, as this chapter has illustrated, while a range of clinical and other care practices are used to support post-TBI rehabilitation and recovery, which of these interventions are most effective for which individuals and at what stage of recovery remains largely unknown. Few well-controlled intervention trials have been carried out in the post-acute stage, and those that have been conducted have often been applied to exclusive samples and settings.

First identified by the 1998 National Institutes of Health (NIH) Rehabilitation of Persons with TBI Consensus Conference (NIH, 1999; Ragnarsson, 2002) and reiterated in subsequent systematic reviews through the Agency for Healthcare Research and Quality (Brasure et al., 2013) and the Institute of Medicine (IOM, 2011), rigorous research on the effectiveness of rehabilitation practices for persons with TBI continues to be sparse. These reviews identified the following difficulties with conducting RCTs in TBI rehabilitation:

• high population heterogeneity with associated differences in spontaneous recovery, requiring either large samples for stratification or strict inclusion criteria that reduce generalizability;
• difficulty or impossibility of blinding;
• extensive range of rehabilitation practices, making it difficult to identify, compare, and characterize interventions in a way that facilitates generalization; and
• ethical concerns with withholding treatment during a period when the patient is thought to reap the most benefit.

Research to date has also been hampered by limited follow-up, particularly for studies employing neuroimaging and biomarkers, and inconsistencies in definitions of injury severity. The simultaneous application of multiple treatments and interventions, a common aspect of TBI rehabilitation, also raises the question of whether it is more meaningful to attempt to define and evaluate the effects of individual rehabilitation components or of the service delivery system more holistically. New types of study approaches, such as a multiphase optimization strategy, may assist in evaluating the effectiveness of rehabilitation components and their interactions (Strayhorn et al., 2021). There also is an ongoing “need for evidence in TBI rehabilitation that delineates the extent that differences in outcomes are attributable to patients’ characteristics such as age, severity, time since injury, and pre-injury factors, and how much outcomes can be attributed to the timing and dose of specific rehabilitation interventions” (Horn et al., 2015, p. S189). The documented impacts on TBI caregivers have also not been addressed through funding for research to develop and disseminate interventions and programs for caregivers.

FEATURES OF AN EFFECTIVE SYSTEM OF POST-ACUTE TBI CARE

Based on the literature, evidence-based guidelines, the committee’s information-gathering sessions, and other sources, a best-practice care pathway for rehabilitation and recovery after TBI would need to include the following features:

• Clear communication between providers as the person with TBI moves along the care pathway from acute stabilization to post-acute, rehabilitation, and longer-term care. The purpose of such communication is to enable effective information sharing while minimizing the chances for patients and families to “fall through the cracks.”
• Clear communication to the person with TBI and their family or caregiver to ensure that they are prepared for the TBI recovery trajectory.
• Development of a person-centered follow-up and rehabilitation plan with input from the person with TBI and their family and taking account of individual needs, goals, and interests. Given the diverse and multidisciplinary needs that accompany TBI, developing this plan would also require input from fields including physical medicine, occupational therapy, physical therapy, speech therapy, rehabilitation psychology, neuropsychology, nursing, and behavioral health.
• Access to and provision of high-quality inpatient and/or outpatient rehabilitation as soon as possible after injury, based on the person’s injury and needs. Initiating TBI rehabilitation shortly after injury is beneficial unless precluded by the person’s condition.
• Planning to ensure that a person can discharged to a safe environment after acute or inpatient care, including screening for risks from falls, driving, sports, or other activities.
• Use of integrated health services to address TBI comorbidities, including mental health difficulties and risky substance use.
• Development and maintenance of culturally competent materials, in multiple languages, providing information about TBI and recovery for patients and families and caregivers.
• Provision of TBI-informed community-based social services to reduce social and societal barriers to optimal recovery and long-term quality of life.
• Support for families and caregivers of persons with TBI, who play critical roles in the recovery process but often report significant stress and burden. Families and caregivers for persons with TBI need support to carry out their caregiving roles, as well as to sustain their own physical and mental health and well-being.

CONCLUSIONS

A variety of high-quality rehabilitation interventions and longer-term services and supports can be provided to people with TBI and their families. However, the current system for TBI care does not provide access to follow-up or rehabilitation for all who could benefit and is often difficult for patients, families, and caregivers to navigate, with no clear roadmap for support and for community-based services after injury. To address these gaps will require meeting the following needs:

• Clinical pathways need to exist for all persons who experience a TBI, of whatever initial severity, to maintain continuity of care and provide follow-up care for any TBI-related consequences that may arise. Multiple care and recovery pathways are needed to address the range of patient needs. Further research is needed as well to compare outcomes for persons with TBI who experience different types of interventions and different systems of care to determine the care pathways that lead to optimal outcomes for these varied scenarios.
• The criteria for authorization and insurance coverage of rehabilitation need to be revisited and to better align with when that rehabilitation is likely to be most effective, rather than being tied to arbitrary intervals with respect to the initial injury. For example, rehabilitation coverage is commonly denied if a person is unable to tolerate a trend toward 3 hours of therapy per day (or 15 hours per week), despite the lack of consistent evidence that the receipt of 3 hours of therapy per day is a significant driver of outcomes from inpatient rehabilitation for persons with TBI in the United States.
• The system needs to encompass the multiple elements of an optimal patient- and family-centered approach to TBI rehabilitation and recovery identified in this chapter.

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