6

Rehabilitation and Long-Term Care Needs After Traumatic Brain Injury

Once acute interventions have stabilized the condition of a person experiencing traumatic brain injury (TBI) (see Chapter 5), the need for rehabilitation and follow-up services becomes paramount. This chapter begins by identifying target outcomes for people with TBI as they move to post-acute care, rehabilitation, and recovery or long-term care. The chapter describes care pathways and types of care a person may receive during this period. The past decade has seen growing awareness of the longer-term consequences of TBI, including concussion and so-called “mild TBI,” along with increasing recognition that persons with TBI can require long-term services and supports. The chapter highlights the needs of persons with TBI, as well as their families and caregivers, in the rehabilitation and recovery process.

Based on current evidence, guidelines, and best practices, the chapter summarizes the features that form part of an optimal system for post-acute and longer-term TBI care. However, the current TBI post-acute care and rehabilitation system is fragmented, is not accessible to many patients, and is not optimally designed to meet the evolving needs of many people with TBI and their families. The chapter concludes by identifying the key gaps that contribute to these challenges and will need to be addressed to improve care and outcomes for TBI patients.

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.

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 evalu-

ation of their injury, while others may be evaluated and referred for additional post-TBI rehabilitation or follow-up.

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

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¹ Lee, K. 2021. System Challenges for TBI Care. Panel discussion during virtual workshop for the Committee on Accelerating Progress in Traumatic Brain Injury Research and Care, March 30, 2021.

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).

Care Pathways for Persons with TBI Who Are Able to Care for Themselves at Discharge from Acute Care

The return home after brain injury can be complex. Many individuals look forward to continuing their recovery in a familiar, comforting, and secure environment near their loved ones (BIAUSA, 2021). Individuals who are discharged home after acute care for TBI may receive a recommendation to follow up with a brain trauma clinic or their primary care provider. Targeted rehabilitation may include cognitive rehabilitation, speech-language pathology services, physical or occupational therapy, vestibular and oculomotor rehabilitation, cervical strain treatment, treatments for specific symptoms (e.g., persistent dizziness), and psychotherapy for mental health concerns.

Although many people with concussion and “mild TBI” may recover fully without rehabilitation, others would benefit from receiving post-acute care. In 2019, the Ontario Neurotrauma Foundation issued Standards for High Quality Post-Concussion Services and Concussion Clinics to inform patients, families, and care providers (ONF, 2017a). The Post-Concussion Care Pathway described by the Foundation suggests that about 55 percent of patients who experience a concussion will improve toward recovery within 1–2 weeks; about 30 percent will experience symptoms that resolve over a longer period; and about 15–20 percent will experience persisting symptoms that require longer-term, interdisciplinary management (ONF, 2017b).

In pockets of the country, these patients may have access to evidence-based, comprehensive concussion management programs that provide specialized rehabilitation and recovery services, such as comprehensive assessment by a coordinating health care provider, symptom monitoring and neuropsychological assessment, referral for multidisciplinary rehabilitation tailored to individual needs, and treatment of comorbidities that affect progress (Bailey et al., 2019; Ellis et al., 2018). The timing of the services is important. Several studies have found that earlier evaluation and access to specialized care after sports-related concussion improves recovery (Desai et al., 2019; Kontos et al., 2020; Master et al., 2020). And while biological sex differences in concussion injury and recovery have been reported, research also indicates that “sex-based differences in recovery disappeared when controlling for time to presentation to specialty care” (Desai et al., 2019, p. 361). This finding suggests that the timing of rehabilitation treatment is a strong factor in recovery—the earlier, the better.

Although specialized concussion centers improve functional outcomes for those patients who need them, these facilities are not available in all areas of the country, and the field of concussion care is not highly regulated. The emergence of private concussion clinics over the past decade has been described by some as a “Wild West” (see, e.g., Crowe, 2016). The interventions these clinics offer are not standardized, and not all interventions provided to

patients have demonstrated efficacy. For example, a 2017 study of the websites of concussion care providers found that “there are few concussion healthcare providers or clinics with access to the complete complement of multidisciplinary professionals required to meet the diverse needs of concussion patients … [and] providers are offering a diverse number of services to concussion patients, some of which are provided by experts with suboptimal training and some that have a limited base of supportive evidence” (Ellis et al., 2017, p. 4).

Care Pathways for Persons with TBI Who Do Not Achieve Independent Functioning Prior to Discharge from Acute Care

For patients who cannot return home safely after post-acute care, transfer to a care setting that provides interdisciplinary comprehensive inpatient rehabilitation is most beneficial (DaVanzo et al., 2014; Nehra et al. 2016). For some patients with complex medical needs, an intermediate stepdown setting may be required before admission to comprehensive rehabilitation. For example, the setting may provide care through a Commission on Accreditation of Rehabilitation Facilities (CARF)-accredited brain injury specialty program designed to meet the complex needs of the patient with TBI. Medicare patients with medical necessity who can tolerate 3 hours of therapy per day or 15 hours per week are eligible for admission to an inpatient rehabilitation facility (IRF), where most CARF-accredited programs are located.² Long-term acute care hospitals (LTACHs) and residential rehabilitation facilities with brain injury specialty designations are also available in some areas for those patients who require longer lengths of stay, as well as interdisciplinary rehabilitation (see Box 6-2).

However, only about 13–25 percent of patients who survive moderate, severe, or penetrating TBI receive comprehensive, interdisciplinary inpatient rehabilitation, and even fewer receive TBI-specialized rehabilitation care (Corrigan et al., 2012). Instead, patients are often discharged to home, where they may or may not receive home health services, or to skilled nursing facilities (SNFs) that do not provide intensive, comprehensive, or specialized therapy and that often limit physician visits to as infrequently as once per month. Acute care hospitals need to open up patient beds as quickly as possible, and may discharge a patient to an alternative care facility with relatively less substantial requirements for preauthorization or prescreening,³ such as an SNF, or to home, expecting the patient’s family to provide care.

Factors affecting the discharge of people with moderate to severe TBI to inpatient rehabilitation, to home, or to care settings such as nursing homes include the severity of injury; such characteristics as age, sex, and race/ethnicity; and payment source (Cuthbert et al., 2011). Injury severity factors play primary roles in decisions to discharge to home, while such sociobiologic and socioeconomic factors as age and race affect decisions to discharge to rehabilitation rather than to sub-acute care. The impact on outcomes for those who do not receive inpatient rehabilitation for TBI has not been sufficiently studied; however, a well-controlled comparison of persons with stroke who received rehabilitation at an IRF versus a

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² Medicare coverage requirements for care in an IRF are described at https://www.cms.gov/Medicare/Medicare-Fee-for-Service-Payment/InpatientRehabFacPPS/Coverage (accessed August 25, 2021). The Complete List of IRF Clarifications for the Coverage Requirements linked from the website states, “the generally accepted standard by which the intensity of these services is typically demonstrated in inpatient rehabilitation facilities (IRFs) is by the provision of intensive therapies at least 3 hours per day at least 5 days per week” (p. 26), while recognizing the possibility of meeting the requirement in other ways. See https://www.cms.gov/Medicare/Medicare-Fee-for-Service-Payment/InpatientRehabFacPPS/Downloads/Complete-List-of-IRF-Clarifications-Final-Document.pdf (accessed August 25, 2021).

³ Hammond, F. 2021. TBI Care Gaps and Opportunities: Provider Perspectives on the Post-Acute Continuum of Care. Panel discussion during virtual workshop for the Committee on Accelerating Progress in Traumatic Brain Injury Research and Care, March 18, 2021.

SNF found better outcomes for the IRF (Hong et al. 2019). Taken together, this evidence suggests an important role for high-quality inpatient rehabilitation after moderate to severe TBI.

Whichever care pathway patients follow, the expectation is that they will ultimately return home. Many will continue to require comprehensive interdisciplinary rehabilitation on an outpatient basis to maintain and expand the gains observed in inpatient rehabilitation. In addition, persons living with more severe TBI often have continuing lifetime needs, such as assistance with return to work, assistance with self-care, accessible housing, and treatment of mental health disorders. Unfortunately, for most patients, TBI-informed care and assistance drop off over time. Families rarely report any source of ongoing support, especially after the first year following TBI.⁴

Access to Post-Acute Care and Services

Health insurance coverage is a major determinant of whether a person with TBI receives rehabilitative services. Unlike acute clinical care, rehabilitation services generally require prior authorization by the health insurance payer. During its information-gathering sessions, the committee heard from patients and families, patient advocacy organizations, and care providers that patients and families often must advocate with insurance companies for coverage of TBI rehabilitation and post-acute care.

Acute care teams encounter multiple barriers when attempting to discharge a person with TBI to a comprehensive, interdisciplinary inpatient rehabilitation facility. Physicians and case managers may lack awareness of the differences in quality of care and outcomes across different types of post-acute care facilities, and therefore can be limited in their ability to address these barriers and secure an optimal discharge disposition for the person. Barriers include the following:

• Securing preauthorization for comprehensive inpatient rehabilitation can sometimes take several days (days that could be used to serve other acute care patients). Even when preauthorization is not required, a preadmission screening may need to be conducted with review by a rehabilitation physician to ensure that the person meets requirements for admission. These requirements are more stringent than those for discharge to SNFs.
• Rehabilitation facilities often require assurance that the individual can be discharged home after rehabilitation. The ability to discharge to home helps ensure that the facility will receive the full federal prospective payment for Medicare patients (lump sum payment per discharge); however, making that prognostication prior to the start of rehabilitation may not be possible. When it is not possible to discharge home, provisions for a per diem payment are in place.
• Patients’ families may be reluctant to have them sent to rehabilitation facilities that may be far from their home. Comprehensive inpatient rehabilitation facilities are usually located in urban centers, which could be several hours away from an individual’s home (and may not even be in the same state). Some families lack access to transportation from such a distance.
• Other factors that affect access to evidence-based TBI rehabilitation include such social determinants of health as age, sex, and race/ethnicity. A lack of diversity in

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⁴ Sander, A. 2021. Family Impacts from TBI and Engagement in TBI Care. Panel discussion during virtual workshop for the Committee on Accelerating Progress in Traumatic Brain Injury Research and Care, March 16, 2021.

the field of physical medicine and rehabilitation and a general lack of cultural competence may also undermine the trust of patients from diverse backgrounds.

• Finally, the length of stay in inpatient rehabilitation facilities is typically short, with pressure to move patients out of the program or to sub-acute care facilities.⁵

Individuals who are active duty service members or Veterans may have easier access to a more comprehensive system of post-acute care relative to civilians. A number of key features of the VA’s Polytrauma System of Care that support high-quality, evidence-based rehabilitation and functional recovery after TBI are highlighted in Chapter 7. However, another major barrier to accessing rehabilitation is the so-called “3-hour rule.” The “3-hour rule”—a Centers for Medicare & Medicaid Services (CMS) practice that requires that patients have sufficient energy and endurance to engage actively in occupational, speech, or physical therapy for 3 hours per day, 5 days per week (or 15 hours per week). Most insurers will cover comprehensive inpatient rehabilitative services for a patient only if this “3-hour rule” is met (Forrest et al., 2019). While exceptions may be possible, most private insurers and the VA consider this metric when authorizing rehabilitation services. Meanwhile, admission to sub-acute rehabilitation at an SNF does not come with this requirement. In response to the lengthier preapproval process for inpatient rehabilitation and because they may need to vacate space for new incoming patients, acute care facilities may opt to discharge their TBI patients to an SNF rather than to a comprehensive inpatient rehabilitation program, even when the patient might have benefited from the latter. This practice constrains access to and coverage for specialized, comprehensive interdisciplinary rehabilitation care that is generally available only at IRFs (and some LTACHs).

Limited evidence supports use of a fixed “3-hour rule” in determining eligibility for rehabilitation. Beaulieu and colleagues (2019) found that the “level of effort” made by TBI patients undergoing inpatient rehabilitation had a positive effect on outcomes, but that compliance with the 3-hour policy did not. Another study found that “patients whose care was consistent with the rule did not have more improvement in function or shorter length of stay than patients whose care was not consistent with the 3-hour rule” (Forrest et al., 2019, p. 1). In sum, widespread use of the “3-hour rule” as a requirement for payer coverage of comprehensive interdisciplinary rehabilitation programs is a significant barrier to care for patients who have difficulty meeting this requirement at the time of evaluation, but may nonetheless experience improved functional outcomes as a result of this intervention.

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 ques-

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⁵ Esquenazi, A. 2021. TBI Care Gaps and Opportunities: Provider Perspectives on the Post-Acute Continuum of Care. Panel discussion during virtual workshop for the Committee on Accelerating Progress in Traumatic Brain Injury Research and Care, March 18, 2021.

tions 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).

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.

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⁶ Frey, K., Y. Goverover, K. McCulloch, T. Pogoda, and D. Porcello. 2021. Accelerating Progress in Traumatic Brain Injury Research and Care: Webinar on Rehabilitation Care and Research, June 15, 2021.

⁷ Ibid.

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).

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⁸ A complete list of VA Health Services Research and Development studies on these approaches can be found at https://www.hsrd.research.va.gov/cyberseminars/catalog-archive.cfm?#Archived.

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

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⁹ See https://www.cdc.gov/traumaticbraininjury/pubs/tbi_report_to_congress.html (accessed August 30, 2021).

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).

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.

Follow-Up and Services via Telehealth

Telehealth encompasses the use of technology, telecommunications, and information systems to support long-distance assessment and clinical care of patients (Mashima and Doarn, 2008; ONC, 2021). This evolving mode of care includes use of the telephone, email, videoconferencing, web-based platforms, mobile health apps, wearable sensors, virtual reality, and other technologies.

Telerehabilitation for any individual needs to be practical, motivational, feasible, and structured (De Luca et al., 2020). It provides a mechanism for addressing problems with communication and social interaction outside the rehabilitation environment; evaluating the everyday-life context; recognizing long-term negative outcomes and functional limitations of depression, social isolation, and unemployment; and providing efficient service delivery in particular for individuals from underserved populations (De Luca et al., 2020; Turkstra et al., 2012).

Several studies with small samples have evaluated the feasibility of using telehealth for assessment of persons with TBI. For example, telephone-administered cognitive testing was found to be feasible, efficient, and useful for persons with moderate to severe TBI at 1 and 2 years postinjury (Dams-O’Connor et al., 2018), while videoconferences were found to be equivalent to in-person recordings (in all but one dimension) for assessing conversational participation among people with TBI (Rietdijk et al., 2020). Similarly, Turkstra and colleagues (2012) found no significant differences in a comparison of in-person and teleconference assessments of discourse ability, supporting the use of telehealth for such assessment. Another study found that ecological momentary assessment (EMA) using smartphones was able to capture mood-related symptoms following TBI (Juengst et al., 2015).

Other studies have supported the feasibility of telehealth for rehabilitation of persons with TBI. Tsaousides and colleagues (2014) demonstrated the feasibility of delivering group therapy by videoconferencing to improve emotion regulation in persons with TBI. Ng and colleagues (2013) found it feasible to deliver the cognitive orientation to daily occupational performance (CO-OP) approach, a metacognitive intervention, via videoconferencing to adults with TBI, and observed trends toward increased community integration and fewer symptoms of cognitive dysfunction with its use. And a study by De Luca and colleagues (2020) supports the feasibility and usability of a virtual reality rehabilitation system for cognitive rehabilitation for patients with severe TBI and their caregivers during the patient’s hospitalization, suggesting its potential therapeutic use at home.

Larger studies using more rigorous designs are beginning to build evidence for the efficacy of telehealth for persons with TBI. A review of studies published between January 1980 and April 2017 testing the efficacy of telerehabilitation yielded 13 eligible studies—10 randomized controlled trials (RCTs) and 3 pre-post group studies (Ownsworth et al., 2018). Although efficacy results were mixed, 4 of 5 RCTs comparing telephone-based interventions with usual care showed positive effects. Further rigorous research will be essential to better understand the effect of various telehealth interventions on rehabilitation care and outcomes.

Providing services via telehealth offers a number of advantages. Telehealth can increase access to care and reduce disparities in access to rehabilitation (WHO, 2015) for persons with TBI who live in rural areas, are geographically distant from rehabilitation services, or experience barriers to care related to social determinants of health. Furthermore, telerehabilitation services show evolving promise in facilitating access to specialized TBI follow-up and neurorestorative services in the home and community-based settings. Care for military service members ranging from acute management of TBI through recovery and rehabilitation currently incorporates telehealth modalities to extend subspecialty consultation to more

remote sites and ensure high-quality standardized care.¹⁰ Telemedicine systems within the VA provide monitoring and care for military Veterans isolated not only by geography but also by poverty and disability (Girard, 2007). In-home VA telehealth services result in decreased hospitalizations, emergency department visits, and lengths of hospital stays (Darkins, 2006). Varied VA and military telehealth services for patients with TBI are being used to assist in assessments, improve care coordination between remote sites, provide teleconsultation for medical management, deliver telerehabilitation, and offer training to patients and providers (Girard, 2007).

During the COVID-19 pandemic, expanded use of telehealth for civilians and Veterans offered an alternative to traditional in-person clinical visits for persons with TBI and other neuropsychological conditions (Wells et al., 2021). The accelerated adoption of telehealth during the pandemic demonstrates the platform’s ability to expand access, reach more locations, improve interdisciplinary collaboration, and customize patient-centered care (Matsumoto et al., 2021). Continued CMS and private insurance coverage of telehealth services for civilians with TBI may be critical to supporting such expanded access longer-term.

Telehealth also has the potential to support family caregivers of persons with TBI; however, telehealth research involving caregivers is limited. In one RCT, an individualized education and problem-solving intervention delivered by telephone to caregivers of persons with moderate to severe TBI was compared with usual care (Powell et al., 2016). Caregivers in the telehealth group showed improved outcomes, particularly in emotional well-being, compared with the usual-care group at 6 months after discharge of the patient to the community. A review of published studies between 1999 and 2019 on telehealth interventions for caregivers of persons with TBI (nine RCTs and three quasi-experimental studies) found that more than half showed positive caregiver outcomes. However, study samples included little racial diversity, limiting the generalizability of results. Further development and evaluation of telehealth interventions to support the well-being of family caregivers with the inclusion of more diverse samples is an important direction for future research.

Accommodations and Further Community Services After TBI

As part of their reintegration into the community, many TBI survivors return to workplaces and schools that hire and teach persons who have experienced TBI and that may need to provide accommodations for them. Despite the large burden of TBI in the population, however, employers have no direct communication with health systems to learn about TBI, and there is no uniform requirement for workplaces, schools, social and community services organizations, or primary health care providers to undergo continued education around this injury. For children, many states do not require return-to-learn planning analogous to the return-to-play laws that have been enacted by all 50 U.S. states, and youth concussion laws in some states that include this requirement apply only to student athletes.¹¹ Several

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¹⁰ Personal communication from Francis L. McVeigh, Office of the Surgeon General, U.S. Army Medical Command, Gary L. Legault, Brook Army Medical Center, and Amy O. Bowles, Brooke Army Medical Center to Eric Schoomaker, November 23, 2021.

¹¹ See The Network for Public Health Law. Summary Matrix of State Laws Addressing Concussions in Youth Sports (https://www.networkforphl.org/wp-content/uploads/2019/11/Summary-of-State-Laws-Addressing-Concussions-in-Youth-Sports-5-28-19.pdf [accessed November 14, 2021]); National Conference of State Legislatures. “Return-to-Learn” State Laws for Students with Traumatic Brain Injuries (https://www.ncsl.org/research/health/-return-to-learn-state-laws-for-students-with-traumatic-brain-injuries.aspx [accessed November 14, 2021]); and Centers for Disease Control and Prevention. HEADS UP: Sports concussion policies and laws (https://www.cdc.gov/headsup/policy/index.html [accessed August 17, 2021]).

states have return-to-learn programs that are not mandated by law, and individual schools or school systems may incorporate procedures for students returning to academics after TBI, but these efforts are variable (Howland et al., 2021; Thompson et al., 2016). This variability in TBI awareness among school and work systems means that TBI recovery needs are not uniformly met within and by these systems.

For people with TBI and their families, other important community-based services might include vocational support, financial assistance, housing assistance, mental health or substance abuse treatment, or other services that support recovery and return to functioning. Supported employment and other vocational rehabilitation services, where available, can help a person with disability from TBI obtain or maintain employment, and such supported employment has demonstrated a return on investment in a limited number of studies (Fure et al., 2021). Other services include day programs and respite care to assist primary caregivers of persons with TBI.

People with TBI and their families who have the most serious needs may require long-term services and supports (LTSS) for months, years, or even their lifetime (see below). These supports are intended to assist recipients and their caregivers in performing tasks they are unable to accomplish on their own, including self-care (e.g., dressing, medication management), home care (e.g., housekeeping), and transportation.

Funding and infrastructure for post-TBI rehabilitation and community services vary widely by state, and the need for services to help patients and families meet long-term needs after TBI is not well addressed in many areas of the country. Even when some services are available in communities, persons with brain injury and their families may be unaware of them, be unable to access them, or find them not suitable without accommodations for cognitive and physical deficits.

The Long-Term Services and Supports Program

The range of state-provided services for persons with physical disabilities (including persons with TBI), older adults, and family caregivers is evaluated by the LTSS State Scorecard (Reinard et al., 2020). Eligibility criteria, coverage, and the services provided vary by state. The scorecard series started in 2011 as a means of measuring states’ performance and providing data for informed policy making. State LTSS systems are evaluated based on (1) affordability and access, (2) choice of setting and provider, (3) quality of life and quality of care, (4) support for family caregivers, and (5) effective transitions. The 2020 scorecard indicated that “state performance remained largely flat across most of the indicators” (p. 16) at a time when demographic trends suggest that the demand for LTSS is increasing. Importantly, persons with TBI living in states with higher LTSS rankings have reported greater community participation and life satisfaction after individual-level differences and outcome fluctuation over time have been taken into account (Corrigan et al., 2021).

LTSS can be provided through Medicaid home- and community-based services (HCBS) waivers enabling people to receive services covered by Medicaid in their home or community rather than in an institutional setting. States request HCBS waivers from CMS. The waivers are generally designed for adult patients with limited financial resources who need the equivalent of inpatient or institutional-level services. While some states already use HCBS waivers to provide services to persons living with TBI and/or spinal cord injury, this use of these waivers is not universal. According to a recent report, fewer than 25,000 people with TBI were receiving LTSS through brain injury waivers in 2018, a figure representing less than 1 percent of persons living with disability due to TBI (Vaughn, 2018). States could explore further adapting existing HCBS waivers to the needs of persons living with TBI to address their

chronic symptoms though education from TBI specialists and use of cognitive and physical accommodations.

Some states have access to additional funding for LTSS for persons with TBI through federal and state sources. Under the Traumatic Brain Injury Act, states can apply for grants to improve access to rehabilitation and community services. About 16 states have consistently secured these grants. Some states include line items in their state budgets, and some have developed trust funds generated from motor vehicle– or alcohol-related offenses (Vaughn, 2018). The funds available through these avenues and their uses vary greatly by state.

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).

Applying Models for Long-Term Care Coordination and Management of Chronic Conditions to TBI

The Chronic Care Model (CCM), a widely accepted model for the lifelong management of medical conditions, has been applied extensively to patients and their families experiencing such illnesses as diabetes and heart failure (Malec et al., 2013). Originally described by Wagner and colleagues (1999), the CCM frames the management of chronic medical conditions as a dynamic, interactive process whereby health system and community resources interact at the system and provider levels to support patient self-management and improve outcomes. When applied to TBI care, a model that incorporates long-term care for TBI as a chronic condition can inform the organization of health care system components, such as delivery system design, decision support, and clinical information systems. A key facet of

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¹² Quoting from the 2012 Galveston Brain Injury Conference; see https://www.utmb.edu/cerpan/moody-prize/consensus (accessed September 27, 2021).

chronic care management is its focus on fostering productive, sustained working relationships between informed, activated patients and prepared, proactive providers.

Models for chronic care management aim to transform the approach to care for people living with chronic conditions from one that is case-specific and reactive to one that is population-based, planned, and proactive (Coleman et al., 2009). This ethos is well suited for application to patients with TBI, who often require active self-management or management by a caregiver while navigating a multitude of ongoing interactions with providers and payers within the health care system (Giacino et al., 2016). Application of chronic care management could also spur the needed transition in TBI practice toward consistent treatment of brain injury as a chronic condition. Broad application of chronic care management to TBI could help catalyze the development and implementation of a structured and comprehensive system for brain injury management to guide more effective assessment and treatment of patients across the continuum of care (Malec et al., 2013). Based on evidence of its benefit when applied to other chronic conditions, chronic care management has the potential to improve patients’ quality of life, as well as providers’ satisfaction, while reducing costs (Coleman et al., 2009). In addition to forging strong patient–provider relationships, applying chronic care management promotes integration and communication between providers and the community at large. This benefit could be of particular importance for persons with TBI, as many cognitive, behavioral, and emotional issues associated with brain injury affect communities through social and vocational vectors.

Despite the potential of chronic care management models to improve the health and well-being of people with TBI, however, their implementation would require establishing the necessary infrastructure and further developing the TBI knowledge base. Key knowledge gaps include the need to better understand long-term impairments and comorbidities associated with TBI, identify risk and protective factors, develop protocols for early detection and patient self-management, and prioritize evidence-based treatments (Corrigan and Hammond, 2013; Giacino et al., 2016). The authors of a study comparing application of chronic care management to cancer survivorship, diabetes management, and chronic TBI care concluded that a separate chronic care management model is needed to address the needs of and resources required by TBI survivors and their family caregivers (Heiden and Caldwell, 2018).

Some efforts are already under way to develop and implement chronic care management for TBI. In Canada, researchers are developing a Chronic Care Model for Neurological Conditions to improve the quality of care and enhance well-being for people with neurological conditions, including severe brain injury (Jaglal et al., 2014). A TBI Model Systems collaborative project led by Indiana University—BeHEALTHY Chronic Disease Management for TBI—is developing a chronic care management approach to support patients with TBI, their caregivers, and their health care providers.¹³ The program aims to produce new knowledge to address evidence gaps in the management of brain injury as a chronic condition.

Although additional research is needed to test the components of a chronic care management model that are most effective for persons with TBI, the committee identified certain features that could be applied. These features include agencies and organizations utilizing collaborative care and integrated care models to optimize mental health outcomes and facilitate behavior change, along with providing person-centered case management and ongoing health care monitoring to persons with TBI experiencing significant sequelae. Such care is necessary to ensure that health needs and the social determinants of health are addressed, thereby optimizing recovery and minimizing the development of new or worsening sequelae. Other elements to support a chronic care management model for TBI include state policies

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¹³ See https://medicine.iu.edu/physiatry/research/behealthy (accessed December 10, 2021).

and resources to ensure that LTSS are available to all persons living with the effects of TBI, and the inclusion in medical and nursing school curricula—and respective board examinations—of modules on screening for lifetime exposure to TBI, recognition of TBI-related sequelae, and TBI management. Finally, a chronic care management model for TBI needs to engage social service agencies, which can screen for lifetime exposure to TBI in their intake processes, and social services providers, who need to receive training on providing accommodations for the sequelae of TBI.

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.

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

TBI in Children and Adolescents

In pediatric TBI patients, coordinated long-term follow-up care is essential to maximize functional outcomes. Evidence has shown that children with moderate to severe TBI have improved long-term outcomes if they receive treatment from pediatric trauma centers, management by specialists, and active early rehabilitation (Fuentes et al., 2016; Potoka et al., 2000). As a result, access to these specialized services becomes paramount (CDC, 2018). However disparities in access to these services exist with regard to insurance and community settings. Uninsured children and children in rural locales have poorer access and worse subsequent outcomes (Greene et al., 2014; Haarbauer-Krupa et al., 2017; Lishner et al., 1996). Rural patients are also at greater risk for more dangerous, higher-energy mechanisms of injury with associated greater trauma and TBI severity compared with their urban counterparts (Yue et al., 2020). These factors, coupled with less access to pediatric trauma centers and postinjury specialist and mental health resources, result in higher health care costs and poorer outcomes in this context.

Attention to academic and school needs is an important focus for pediatric TBI, as most children with moderate to severe TBI and many with mild TBI require academic support and accommodation after injury (Hartman et al., 2015). While services including early intervention, special education, and academic support are technically legally available to children with TBI through a Section 504 plan, many patients and families experience challenges in obtaining this support (Glang et al., 2008; Haarbauer-Krupa, 2012). And even with this support, many patients and families find that educators lack training in how best to support children in the academic setting after injury (Ettel et al., 2016). Legislation mandating identification and removal from play in cases of concussion¹⁴ and a standardized plan for return to play involving medical supervision has led to systematic improvement in the diagnosis and management of sport-related concussion and standardized return-to-play protocols (Bell et al., 2019; McCrory et al., 2017). Attention to the return to academics after concussion has lagged somewhat behind return to play, but awareness of the impact of concussion on academics is increasing, with progress made in terms of expert recommendations on how best to support students returning to school (Gioia, 2016; Halstead et al., 2013; Rose et al., 2015). During testimony at its public sessions, the committee heard that coordination between medical providers and schools is key to ensuring that children and adolescents with TBI can meet educational requirements during the recovery process.¹⁵

TBI in Older Adults

The increase in the aging population in the United States and the prevalence of TBI in this demographic group have led to growing recognition of TBI as an important issue for older adults (Flanagan et al., 2005; Peters, 2020). Yet the effects of age on recovery from TBI

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¹⁴ See National Conference of State Legislatures. Traumatic Brain Injury Legislation https://www.ncsl.org/research/health/traumatic-brain-injury-legislation.aspx (accessed March 3, 2022).

¹⁵ Brandt, L., S. Hamilton, K. Primeau, A. Purser, and K. Swift. 2021. Patient Experiences with TBI Systems of Care. Panel discussion during virtual workshop for the Committee on Accelerating Progress in Traumatic Brain Injury Research and Care, March 16, 2021.

remain understudied, and clinical guidelines for care of elderly people with TBI are underdeveloped (Stein et al., 2018). For example, Gardner and colleagues (2018, p. 890) found that “despite the large and growing epidemic of older adults with incident TBI, there are few to no evidence-based geriatric TBI guidelines to inform complex medical decisions for ether acute or long-term management.”

Of particular concern is the number of TBIs occurring in older adults as a result of falls. According to the Centers for Disease Control and Prevention (CDC), falls are the leading cause of TBI (51 percent) for older adults. Age-related changes, such as frailty, balance problems, joint problems, medical comorbidities, and medications, can increase fall risk (Cefalu, 2011). In addition, changes in the brain occur with aging (Gardner et al., 2018). Distinguishing between mild cognitive impairment due to aging and cognitive effects arising from a mild TBI can be challenging,¹⁶ while underserved seniors can reportedly also be “misdiagnosed as having dementia and are deemed not candidates for intensive rehabilitation.”¹⁷ Pain is common in older adults with TBI as well (Kornblith et al., 2020).

Rehabilitation for TBI in older adults warrants approaches that distinguish it from standard rehabilitation (Narapareddy et al., 2019; Peters, 2016; Stein et al., 2018). A longer time period is often needed to accommodate a slower trajectory of improvement. Maintenance rehabilitation may also be required to sustain functioning over time (Stein et al., 2018). However, long-term longitudinal studies of rehabilitation in later life are generally lacking (Griesbach et al., 2018). Most research has been cross-sectional, with individuals of different ages being compared (Narapareddy et al., 2019), an approach that limits the ability to identify causative factors that could be modified.

A number of other knowledge gaps exist with regard to care and outcomes after TBI in older adults. Examining the unique features related to geriatric TBI could enable the development of new intervention methods or more effective implementation of existing methods. Questions to be addressed include the following:

• The relationship of changes that take place in the aging brain to TBI outcomes (Griesbach et al., 2018). Experiencing a TBI is a risk factor for the development of neurodegenerative diseases, such as dementia. However, further investigation of this risk is needed.¹⁸ Studies of the connection between TBI and dementia are difficult, as such studies generally rely on self-recall of remote events or require longitudinal designs for a prolonged period.
• Identification and validation of biomarkers in older patients (Gardner et al., 2018). Studies may exclude elderly populations because of potentially different pathology or comorbidities that increasingly are observed in older samples. Few biomarker studies have examined differential biomarker profiles based on age and other factors, including comorbidities and common medications. Another key issue is the greater overlap with stroke pathology in older samples, as well as difficulty in diagnosing a TBI using computed tomography (CT) in older individuals.
• Understanding the role of preexisting conditions in TBI outcomes. Many earlier TBI studies failed to include patients with preexisting conditions, a gap that leads to the

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¹⁶ Frey, K., Y. Goverover, K. McCulloch, T. Pogoda, and D. Porcello. 2021. Accelerating Progress in Traumatic Brain Injury Research and Care: Webinar on Rehabilitation Care and Research, June 15, 2021.

¹⁷ Connors, S. 2021. Family Impacts from TBI and Engagement in TBI Care. Panel discussion during virtual workshop for the Committee on Accelerating Progress in Traumatic Brain Injury Research and Care, March 16, 2021.

¹⁸ Miller, B. 2021. Comparative Systems of Care: Lessons from Other Disease Systems. Presentation and panel discussion during virtual workshop for the Committee on Accelerating Progress in Traumatic Brain Injury Research and Care, March 30, 2021.

exclusion of older adults, decreases the generalizability of findings to this population (Peters and Gardner, 2018), and makes it impossible to identify factors that contribute to differential outcomes based on older age. In a recent review, Gardner and colleagues (2018) conclude that few studies have examined the role of preexisting comorbidities in TBI outcomes in older adults, and few have evaluated the role of pre-TBI functional status in predicting TBI outcomes.

• Understanding “mild TBI” in older adults. Compared with the number of studies of functional outcomes in all-severity or moderate to severe TBI, functional outcomes in in older adults with mild TBI have received little attention (Gardner et al., 2018). Diagnosis of mild TBI in older individuals may also be impeded by a lack of clear reporting by the patient or attribution to other factors, such as blood pressure and cognitive issues. Therefore, the actual prevalence of this condition in older adults may be higher than known, and may result in more morbidity than previously estimated.

Persons with Disorders of Consciousness

A severe TBI can result in disorders of consciousness (DOC), including coma, vegetative state, and minimally conscious state. Patients with severe TBI may not display signs of consciousness until 4–8 weeks postinjury (Giacino et al., 2020). For a sample of patients unable to follow commands at admission to rehabilitation, two-thirds were following commands by discharge from rehabilitation, and by 5 years, independent functioning ranged from 56 percent to 85 percent, depending on the functional domain (Whyte et al., 2013). Among patients who were unable to follow commands by rehabilitation discharge, independence at 5 years ranged from 19 percent to 36 percent, depending on functional domain (Whyte et al., 2013). An additional 31–69 percent were able to participate in a functional task by 5 years even if they were not fully independent. For patients who are minimally conscious, “rehabilitation during the first 6 months after traumatic brain injury may increase the chances of improving outcomes” (AAPM&R, 2021, para. 8). These results highlight the possibility of meaningful functional progress over time even in patients who experience very severe TBI.¹⁹ Unfortunately, once discharged, a patient is unlikely to be evaluated again, despite research showing that recovery is a long-term process. Prognostication for persons who experience severe TBI and DOC needs to be improved. Patient heterogeneity and spontaneous recovery need to be better addressed, and more long-term outcome studies are needed as well. Once patients are medically stable, however, they are discharged from acute care to institutions, including sub-acute rehabilitation facilities and SNFs, that have little or no research infrastructure, as well as to home, which makes meeting these research needs challenging.

Models for care that is age- and ability-appropriate and long-term need to be developed for patients who experience DOC. Greater provider awareness of the possibility of better long-term prognosis than traditionally considered is an important need as well. One type of alternative care model could entail temporarily referring all TBI patients with DOC to intensive multidisciplinary rehabilitation programs for expert evaluation and prognostic assessment, followed by treatment plan recommendations that might include continued rehabilitation at an IRF or LTACH or an alternative pathway of care.

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¹⁹ Giacino, J., R. Nakase-Richardson, and J. Whyte. 2021. Disorders of Consciousness After Traumatic Brain Injury: A Virtual Workshop for the Committee on Accelerating Progress in Traumatic Brain Injury Research and Care, May 24, 2021.

In 2018, the American Academy of Neurology; the American Congress of Rehabilitation Medicine; and the National Institute on Disability, Independent Living, and Rehabilitation Research released a new guideline on caring for patients with DOC (Giacino et al., 2018). And in 2019, the Neurocritcal Care Society launched the Curing Coma Campaign to raise awareness of needs among this patient population and develop new treatment strategies (Provencio et al., 2020).

A variety of therapies—pharmacologic, neuromodulation, mechanical, and sensory—exist for persons with prolonged DOC (Edlow et al., 2021). The potential utility of regenerative (e.g., cell-based) therapies is also being explored (Cox, 2018). Studies of central nervous system and deep brain stimulation in patients with prolonged DOC have been promising, but many have had small sample sizes or limited rigor, and it is challenging to compare studies that used different time points, stimulation regimens, treatment durations, and other variables. RCTs have found that participants in minimally conscious states, but not participants in vegetative or unresponsive wakefulness states, show increased consciousness with use of the noninvasive neuromodulation method of transcranial direct current stimulation (tDCS) (Zaninotto et al., 2019). Other forms of neuromodulation have also been tested, including transcranial magnetic stimulation (TMS) and stimulation of the peripheral vagus nerve. Some moderate, transient adverse effects, as well as a potential increase in the risk of seizure, have been noted for noninvasive stimulation (Matsumoto and Ugawa, 2016; Oberman et al., 2020; Stultz et al., 2020).

Knowledge gaps remain for all forms of therapy for patients with DOC. Elements needed to fill these gaps include a conceptual framework for better understanding mechanisms of action and the identification of biomarkers for detecting subclinical effects in early-phase trials. Research needs identified as part of the Curing Coma Campaign include (Hammond et al., 2021)

• identifying meaningful and patient-centered outcomes and milestones for different patient groups based on biological features, treatment response, outcome probability, premorbid characteristics of the individual’s health, biology, and other factors;
• improving prognostic accuracy through use of big data and identifying the best ways to communicate prognosis and its uncertainty in a culturally sensitive manner; and
• determining which health care delivery models will maximize recovery.

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

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²⁰ Rotenberry, E. 2021. Family Impacts from TBI and Engagement in TBI Care. Panel discussion during virtual workshop for the Committee on Accelerating Progress in Traumatic Brain Injury Research and Care, March 16, 2021.

²¹ Sander, A. 2021. Family Impacts from TBI and Engagement in TBI Care. Panel discussion during virtual workshop for the Committee on Accelerating Progress in Traumatic Brain Injury Research and Care, March 16, 2021.

²² Ibid.

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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