NIH Consensus Development Conference on Rehabilitation of Persons with Traumatic Brain Injury
NIH Consensus Statement
IN PRESS March 9, 1999
NATIONAL INSTITUTES OF HEALTH
CONSENSUS DEVELOPMENT CONFERENCE STATEMENT
REHABILITATION OF PERSONS WITH TRAUMATIC BRAIN INJURY
OCTOBER 26-28, 1998
The objective of this NIH Consensus Statement is to inform the biomedical research and clinical practice communities of the results of the NIH Consensus Development Conference on Rehabilitation of Persons with Traumatic Brain Injury. The statement provides state-of-the-art information regarding effective rehabilitation measures for persons who have suffered a traumatic brain injury (TBI) and presents the conclusions and recommendations of the consensus panel regarding these issues. In addition, the statement identifies those areas that deserve further investigation. Upon completion of this educational activity, the reader should possess a clear working clinical knowledge of the state of the art regarding this topic. The target audience for this statement includes, but is not limited to, pediatricians, family practitioners, internists, neurologists, physiatrists, psychologists, and behavioral medicine specialists.
Participants were a non-Federal, nonadvocate, 16-member panel representing the fields of neuropsychology, neurology, psychiatry, behavioral medicine, family medicine, pediatrics, physical medicine and rehabilitation, speech and hearing, occupational therapy, nursing, epidemiology, biostatistics and the public. In addition, 31 experts from these same fields presented data to the panel and a conference audience of 883.
The literature was searched through Medline and an extensive bibliography of references was provided to the panel and the conference audience. Experts prepared abstracts with relevant citations from the literature. A compendium of evidence was prepared by the panel which included a contribution from a patient with TBI, a report from an Evidence Based Practice Center of the Agency for Health Care Policy and Research, and a report from the National Center for Injury Prevention and Control at the Centers for Disease Control and Prevention. Scientific evidence was given precedence over clinical anecdotal experience.
The panel, answering predefined questions, developed their conclusions based on the scientific evidence presented in open forum and the scientific literature. The panel composed a draft statement that was read in its entirety and circulated to the experts and the audience for comment. Thereafter, the panel resolved conflicting recommendations and released a revised statement at the end of the conference. The panel finalized the revisions within a few weeks after the conference. The draft statement was made available on the World Wide Web immediately following its release at the conference and was updated with the panel's final revisions.
Traumatic Brain Injury (TBI) results principally from vehicular incidents, falls, acts of violence, and sports injuries, and is more than twice as likely in males as in females. The estimated incidence rate is 100 per 100,000 persons with 52,000 annual deaths. The highest incidence is among persons 15 to 24 years of age and 75 years and older, with an additional less striking peak in incidence in children ages 5 and younger. Since TBI may result in lifelong impairment of an individual's physical, cognitive, and psychosocial functioning and prevalence is estimated to be 2.5 million to 6.5 million individuals, TBI is a disorder of major public health significance. Furthermore, mild TBI is significantly under diagnosed and the likely societal burden therefore even greater. Given the large toll of TBI and absence of a cure, prevention is of paramount importance. However, the focus of this conference was the evaluation of rehabilitative measures available for the cognitive and behavioral consequences of TBI.
Although studies are relatively limited, available evidence supports the use of certain cognitive and behavioral rehabilitation strategies for individuals with TBI. This research needs to be replicated in larger, more definitive clinical trials. Well-designed and controlled studies using innovative methods are needed to evaluate the benefits of different rehabilitation interventions. Increased understanding of the mechanisms of TBI and recovery hold promise for new treatments. Thus, funding for research on TBI needs to be increased. Persons with TBI, their families, and significant others are integral to the design and implementation of the rehabilitation process and research. Consequently, rehabilitation services, matched to the needs of persons with TBI, and community-based non medical services are required to optimize outcomes over the course of recovery. Public and private funding for rehabilitation of persons with TBI must be adequate to meet these acute and long-term needs, especially in consideration of the current healthcare environment where access to these treatments may be jeopardized by changes in payment methods for private insurance and public programs.
Traumatic brain injury (TBI), broadly defined as brain injury from externally inflicted trauma, may result in significant impairment of an individual's physical, cognitive, and psychosocial functioning. In the United States, an estimated 1.5 to 2 million people incur TBI each year, principally as a result of vehicular incidents, falls, acts of violence, and sports accidents. The number of people surviving TBI with impairment has increased significantly in recent years, which is attributed to faster and more effective emergency care, quicker and safer transportation to specialized treatment facilities, and advances in acute medical management. TBI affects people of all ages and is the leading cause of long-term disability among children and young adults.
Each year, approximately 70,000 to 90,000 individuals incur a TBI resulting in a long-term, substantial loss of functioning. The consequences of TBI include a dramatic change in the individual’s life-course, profound disruption of the family, enormous loss of income or earning potential, and large expenses over a lifetime. There are approximately 300,000 hospital admissions annually for persons with mild or moderate TBI, and an additional unknown number of traumatic brain injuries (TBIs) that are not diagnosed but may result in long-term disability.
Although TBI may result in physical impairment, the more problematic consequences involve the individual's cognition, emotional functioning, and behavior. These impact interpersonal relationships, school, and work. Cognitive-behavioral remediation, pharmacologic management, assistive technology, environmental manipulation, education, and counseling are among currently used treatments of these sequelae. These treatments are provided in freestanding rehabilitation hospitals, rehabilitation departments in general hospitals, a variety of day treatment or residential programs, skilled nursing facilities, schools, the community, and the home.
The Traumatic Brain Injury Act of 1996 instructed the Secretary of Health and Human Services, acting through the Director of the National Center for Medical Rehabilitation Research within the National Institute of Child Health and Human Development, to conduct "a national consensus conference on managing traumatic brain injury and related rehabilitation concerns." The NIH organized a 2½-day conference to evaluate the scientific data concerning rehabilitation practices for persons with TBI. Particular emphasis was placed on rehabilitation of cognitive, behavioral, and psychosocial difficulties associated with mild, moderate, and severe TBI. The conference brought together national and international biomedical researchers and clinicians, as well as persons with TBI and their families.
On the second day of the conference, 1½ hours were allocated for brief oral presentations by individuals representing interested organizations regarding the conference issues and by persons wishing to present their own individual statements.
After 1½ days of presentations and audience discussion, an independent, non-Federal consensus panel chaired by Dr. Kristjan T. Ragnarsson, Professor and Chair, Department of Rehabilitation Medicine, Mount Sinai School of Medicine, weighed the scientific evidence and wrote a draft statement that was presented to the audience on the third day. The statement took into account the panel’s year-long review of the scientific literature. The consensus statement addressed the following key questions:
- What is the epidemiology of traumatic brain injury in the United States, and what are its implications for rehabilitation?
- What are the consequences of traumatic brain injury in terms of pathophysiology, impairments, functional limitations, disabilities, societal limitations, and economic impact?
- What is known about mechanisms underlying functional recovery following TBI, and what are the implications for rehabilitation?
- What are the common therapeutic interventions for the cognitive and behavior sequelae of TBI, what is their scientific basis, and how effective are they?
- What are common models of comprehensive, coordinated, multidisciplinary rehabilitation for people with TBI, what is their scientific basis, and what is known about their short-term and long-term outcomes?
- Based on the answers to these questions, what can be recommended regarding rehabilitation practices for people with TBI?
- What research is needed to guide the rehabilitation of people with traumatic brain injury?
The primary sponsors of this meeting were the National Institute of Child Health and Human Development and the NIH Office of Medical Applications of Research. The conference was cosponsored by the National Institute on Deafness and Other Communication Disorders, the National Institute of Mental Health, the National Institute of Neurological Disorders and Stroke, the National Institute of Nursing Research, the Office of Alternative Medicine, and the Office of Research on Women's Health of the NIH; the Agency for Healthy Care Policy and Research; and the Centers for Disease Control and Prevention.
What Is the Epidemiology of Traumatic Brain Injury in the United States, and What Are Its Implications for Rehabilitation?
The epidemiology of TBI, including incidence, prevalence, etiology, and natural history, can guide our estimates of the demand for and range of required TBI rehabilitation services. Data from Centers for Disease Control and Prevention (CDC)-sponsored State surveillance projects report annual rates of TBI of 100 per 100,000 persons with 52,000 annual deaths. Prevalence estimates range from 2.5 million to 6.5 million individuals living with the consequences of TBI. These estimates, however, suffer from ascertainment bias since they are based exclusively on information about hospitalized patients and those who die before hospitalization.
It is important to separately address mild, moderate, and severe TBI. Until data are available beyond those based on hospitalized patients, it will not be possible to understand and study the full spectrum of the disease. The recent State surveillance systems directed in part by CDC have adopted common data collection and reporting methods, which provide good epidemiologic data about persons with TBI who are hospitalized or die. Newer methodologies to assess the epidemiology of mild TBI that does not result in hospitalization should be developed and its incidence and prevalence rigorously studied.
Existing data point to potential areas for prevention of TBI and design of rehabilitation programs. Males are more than twice as likely as females to experience TBI. The highest incidence is among persons 15 to 24 years of age and 75 years and older, with an additional less striking peak in incidence in children ages 5 and younger. Alcohol is reported to be associated with half of all TBI, either in the person causing the injury or in the person with the injury.
Approximately 50 percent of TBIs are the result of motor vehicle, bicycle, or pedestrian-vehicle incidents. Safety belts, air bags, infant and child car seats, as well as changes in speed limits, road design, and traffic control have reduced motor vehicle-related deaths and TBI. Additional preventive measures to reduce TBI caused by alcohol-related motor vehicle accidents should be developed and assessed.
Falls are the second most frequent cause of TBI among the frail elderly and the very young. Risk factors for falls among the elderly include alcohol, medication, and osteoporosis. Few preventive measures are in place for either the very young or the elderly; however, there have been some changes in the design of walkers, strollers, and shopping carts to help prevent falls among young children.
Violence-related incidents account for approximately 20 percent of TBI. These incidents are almost equally divided into firearm and non-firearm assaults. The highest incidence for TBI due to firearms is among people ages 15 to 24. This is also a high-risk age for non-firearm assaults. Programs to prevent street violence must be strengthened, especially through legislation to control use of handguns and to increase their safety.
Assault is also a major cause of TBI in the very young. Although unintentional injuries account for 75 percent of TBI in this age group, child abuse is also an issue. Shaken baby syndrome results specifically in TBI and spinal cord injury. Domestic violence affects children and adults of both genders.
Although sports- and recreation-related injuries account for 3 percent of hospitalized persons with TBI, approximately 90 percent of sports-related TBIs are mild and may go unreported, thus leading to the underestimate of the actual incidence rate of sports-related TBI. Sports-related TBI occurs most frequently among people ages 5 to 24 who have many decades of life ahead. Risk factors are poorly delineated. There is great promise for prevention of sports-related TBI.
Risk factors for these causes of TBI are rarely studied, leaving large gaps in the knowledge of appropriate prevention strategies and the association of those risk factors with etiologies and outcomes. In addition, etiologies and risk factors may affect the selection of rehabilitation strategies. For example, children with TBI secondary to child abuse or street violence may have limited options for community-based rehabilitation. Injuries related to alcohol or drug abuse often necessitate chemical dependency treatment in the rehabilitation process.
These epidemiologic profiles indicate that TBI is extremely heterogeneous. This is apparent in the distribution of TBI by age, gender, ethnicity, severity, and cause. Multiple rehabilitation strategies to accommodate these complexities are needed.
What Are the Consequences of Traumatic Brain Injury in Terms of Pathophysiology, Impairments, Functional Limitations, Disabilities, Societal Limitations, and Economic Impact?
Rarely are the consequences limited to one set of symptoms, clearly delineated impairments, or a disability that affects only one part of a person's life. Rather, the consequences of TBI often influence human functions along a continuum from altered physiological functions of cells through neurological and psychological impairments, to medical problems and disabilities that affect the individual with TBI, as well as the family, friends, community, and society in general. When other, more urgent medical problems are apparent at onset, mild TBI may be masked, even though it can result in impairments. In many cases, the consequences of TBI endure in original or altered forms across the lifespan, with new problems likely to occur as a result of new challenges and the aging process. The neurological consequences of TBI are many and complex, occurring throughout the neural axis. Any sensory, motor, and autonomic function may be compromised. Most of these complications are apparent within the first days or months following injury, depending on the severity of initial trauma. Some long-term sequelae include a variety of movement disorders, seizures, headaches, ambient visual deficits, and sleep disorders.
Non-neurological medical complications include, but are certainly not limited to, pulmonary, metabolic, nutritional, gastrointestinal, musculoskeletal, and dermatologic problems.
The cognitive consequences of TBI are similarly broad. All of these consequences can occur singly or in combinations and are variable in terms of their effects on individuals; furthermore, they change in severity and presentation over time. In combination, they produce a myriad of functional problems. Some of the most persistent problems include memory impairment and difficulties in attention and concentration. Deficits in language use and visual perception are common, but often unrecognized. Frontal lobe functions, such as the executive skills of problem-solving, abstract reasoning, insight, judgment, planning, information processing, and organization, are vulnerable to TBI.
Common behavioral deficits include decreased ability to initiate responses, verbal and physical aggression, agitation, learning difficulties, shallow self-awareness, altered sexual functioning, impulsivity, and social disinhibition. Mood disorders, personality changes, altered emotional control, depression, and anxiety are also prevalent after TBI.
Social consequences of mild, moderate, and severe TBI are many and serious, including increased risk of suicide, divorce, chronic unemployment, economic strain, and substance abuse. These consequences are tragic to individuals and families and place additional burdens on social service agencies, law enforcement, and the courts. As individuals with TBI attempt to resume their usual daily activities, the environment places increasing demands on them, uncovering additional psychosocial consequences. For example, executive dysfunction may become obvious only in the workplace; behavioral changes affecting interpersonal relationships may appear after leaving inpatient care. Spiraling adverse consequences of TBI may become apparent not only for persons with TBI but also for their significant others. Family members report depression, social isolation, and anger. Overall family functioning and relationships are disrupted. Such consequences may continue and, in some instances, worsen with age.
Children with TBI have their own set of consequences. Interactions of physical, cognitive, and behavioral sequelae interfere with the task of new learning. The effect of early TBI may not become apparent until later in the child's development, although there is little explicit literature on the developmental consequences of TBI in infants. There may be a poor fit between the needs of children with TBI and the typical school educational programs. Children with TBI also may have difficulties with peers due to cognitive processing, behavioral problems, or difficulty comprehending social cues. Parents are faced with significant parenting challenges, including coping with changed academic aspirations and family goals.
TBI in adolescents has been largely unstudied. It is unclear, therefore, whether the consequences they face are best described by the literature pertaining to adults or children.
The economic consequences of TBI are enormous. The annual cost of acute care and rehabilitation in the United States for new cases of TBI is estimated at $9 to $10 billion. Estimates for average lifetime cost of care for a person with severe TBI range from $600,000 to $1,875,000. These figures may grossly underestimate the economic burden of TBI to family and society because they do not include lost earnings, costs to social services systems, and the value of the time and foregone earnings of family members who care for persons with TBI.
Access to initial care and subsequent rehabilitation for persons with TBI may depend greatly on insurance coverage, health care personnel, family and community, geographic location, knowledge of available resources, and the ability to navigate the medical care and rehabilitation system successfully.
What Is Known About Mechanisms Underlying Functional Recovery Following TBI, and What Are the Implications for Rehabilitation?
TBI represents an evolving dynamic process that involves multiple interrelated physiological components that exert primary and secondary effects at the level of the individual nerve cell (neuron), the level of connected networks of such neurons (neural networks), and the level of human thought (cognition). Many damaging changes to the connections among neurons (axons) and to the neurons themselves have been described. These include chemical changes to the basic molecules of metabolism (especially calcium), to mechanisms of the human cellular response to injury, and to the quantities of certain molecules that can be dangerous in excess (oxygen free radicals, nitric oxide). A protein substance that is present in Alzheimer's disease (beta amyloid) also can be deposited in neurons. Communication molecules in the brain (neurotransmitters) have either excitatory or inhibitory effects. The most prevalent of these excitatory molecules are the amino acids glutamate and aspartate, which can occur in massive amounts following TBI, leading to overexcitation and ultimately the death of neurons. At the cognitive level, alterations in neural networks and neurotransmitter systems (especially ones involving the transmitters acetyl choline, dopamine, and serotonin) can affect cognition and behavior.
Although the pathophysiology of TBI is under intense investigation in animals, application of these findings to the understanding of neurobiological mechanisms underlying functional recovery in humans remains to be delineated. The relative importance of each mechanism to recovery potential at different stages after TBI remains unclear.
The basic mechanisms of injury and recovery have motivated the evaluation of experimental treatments in animals (e.g., protection of neurons from overexcitation or the effects of damaging molecules), whereas basic understanding of the capacity of neurons to grow and form connections with other neurons (cellular plasticity) has motivated others. The injured brain does have some capacity to recover. Elements of neural plasticity include increases of chemicals that promote growth of neural connections (growth factors) and alterations in the number and nature of these connections through changes in neuron structure. Promising strategies in neuroplasticity include nerve growth factors, other mediators of growth, and tissue transplantation. Ultimately, gene therapy may be a way to deliver such growth factors to targeted locations. Interventions to improve neural network and cognitive function may involve particular types of experience and stimulation (e.g., complex environments), with experience-dependent changes demonstrable in the biology of neural connections, small blood vessels, and even the organization of brain layers.
The temporal course of recovery is probably lengthy (months to years), and the rate of recovery may vary over time. Recovery may incorporate particular substages that have unique pathophysiology. The temporal course may exhibit regional and functional differences. For example, at the cellular level, a particular type of cell death (apoptosis), which is normally present only during early brain development, may occur in different regions at different times, including many months following injury. At the neural network level, experience-dependent changes related to activity or learning have been demonstrated at various times after experimental brain damage in animals. Cognitive recovery proceeds in overlapping stages, with more marked improvements in particular skills occurring at different times. In addition, great variability in behavior is characteristic after TBI. Mechanisms currently used for reestablishing appropriate and adaptive behaviors in adults with TBI include learning, the development of supportive contexts, and environmental manipulations. These mechanisms focus not only on persons with TBI, but also on their families and the communities in which they live. Given the complexity of the recovery processes, treatment protocols likely will need to be carefully designed and systematically staged to introduce these potential therapeutic interventions consistent with the temporal sequence of pathophysiological and plastic events.
The gap between animal model studies of interventions and human clinical practice is particularly wide. Four reasons for this gap are (1) the differences between induced animal injury (e.g., fluid percussion injury) and human TBI, (2) the differences in severity of injury, (3) the timeframes of interventions for particular impairments, and (4) the presence of intolerable side effects. Furthermore, studies in animals are unable to address the complicated behavioral characteristics of human cognition after TBI. Successful study of brain/behavior relationships after TBI may depend on comparing cognitive domains (e.g., learning, attention, concentration, and memory) with biological processes, which can be studied only in humans.
Several conclusions from this review are possible. The time course of TBI is prolonged and, in some cases, lifelong. The neural and cognitive mechanisms of injury and recovery are myriad, complex, and interrelated. Different underlying mechanisms are active at different times during recovery; consequently, specific interventions might have beneficial effects at certain times and not others. Although certain rehabilitative interventions probably should be started immediately, others probably should be delayed to maximize effectiveness and minimize adverse effect.
What Are the Common Therapeutic Interventions for the Cognitive and Behavioral Sequelae of TBI, What Is Their Scientific Basis, and How Effective Are They?
The goals of cognitive and behavioral rehabilitation are to enhance the person's capacity to process and interpret information and to improve the person's ability to function in all aspects of family and community life. Restorative training focuses on improving a specific cognitive function, whereas compensatory training focuses on adapting to the presence of a cognitive deficit. Compensatory approaches may have restorative effects at certain times. Some cognitive rehabilitation programs rely on a single strategy (such as computer-assisted cognitive training), while others use an integrated or interdisciplinary approach. A single program can target either an isolated cognitive function or multiple functions concurrently.
Despite many descriptions of specific strategies, programs, and interventions, limited data onthe effectiveness of cognitive rehabilitation programs are available because of heterogeneity of subjects, interventions, and outcomes studied. Outcome measures present a special problem, since some studies use global "macro"-level measures (e.g., return to work), while others use "intermediate" measures (e.g., improved memory). These studies also have been limited by small sample size, failure to control for spontaneous recovery, and the unspecified effects of social contact. Nevertheless, a number of programs have been described and evaluated.
Cognitive exercises, including computer-assisted strategies, have been used to improve specific neuropsychological processes, predominantly attention, memory, and executive skills. Both randomized controlled studies and case reports have documented the success of these interventions using intermediate outcome measures. Certain studies using global outcome measures also support the use of computer-assisted exercises in cognitive rehabilitation.
Compensatory devices, such as memory books and electronic paging systems, are used both to improve particular cognitive functions and to compensate for specific deficits. Training to use these devices requires structured, sequenced, and repetitive practice. The efficacy of these interventions has been demonstrated.
Psychotherapy, an important component of a comprehensive rehabilitation program, is used to treat depression and loss of self-esteem associated with cognitive dysfunction. Psychotherapy should involve individuals with TBI, their family members, and significant others. Specific goals for this therapy emphasize emotional support, providing explanations of the injury and its effects, helping to achieve self-esteem in the context of realistic self-assessment, reducing denial, and increasing ability to relate to family and society. Although the use of psychotherapy has not been studied systematically in persons with TBI, support for its use comes from demonstrated efficacy for similar disorders in other populations.
Pharmacological agents may be useful in a variety of affective and behavioral disturbances associated with TBI. Although specific studies in persons with TBI are few, these agents are typically used in TBI for their direct and indirect pharmacological properties. People with TBI may be more likely to experience detrimental side effects from these drugs than people without TBI; therefore, additional caution should be used in prescribing and monitoring psychopharmacologic treatment.
Behavior modification has been used to address the personality and behavioral effects of TBI. It also has been used in retraining persons with TBI in social skills. Many descriptive studies and a single prospective clinical trial provide limited support for the efficacy of this approach.
The value of vocational rehabilitation strategies, such as short-term and long-term supported employment and job coaching, is indicated by observational studies. This is particularly important since return to work is among the most significant outcomes of successful rehabilitation. Community colleges and other structured educational institutions may be valuable resources for some persons with TBI.
For children, most rehabilitation services occur in the school setting. Children with TBI frequently attend special education services. The effectiveness of these services for children with TBI has not been well studied. Unfortunately, problems specifically related to TBI in children frequently are not identified.
Comprehensive interdisciplinary rehabilitation treatment, provided by a diverse team of experienced professionals, is commonly used for persons with TBI. These programs use individually tailored interventions, both restorative and compensatory, in order to achieve both intermediate goals in cognitive functioning and larger scale (global) outcomes. This personalized approach leads to great difficulty in the scientific evaluation of effectiveness, because there is significant heterogeneity among both persons with TBI and their comprehensive treatment programs. Nonetheless, uncontrolled studies and one nonrandomized clinical trial support the effectiveness of these approaches.
Other interventions, such as structured adult education, nutritional support, music and art therapy, therapeutic recreation, acupuncture, and other alternative approaches, are used to treat persons with TBI. These methods are commonly used, but their efficacy has not been studied.
There are many reports of interventions for family members of individuals with TBI, including psychological and social support and education. Although no empiric studies have evaluated the efficacy of these interventions, they are supported by substantial clinical experience.
Despite the relative paucity of rigorous investigation and the heterogeneity of subjects, study design, and outcome, several common and consistently recurring themes emerge from a detailed review of the scientific evaluations of cognitive and behavioral rehabilitation interventions. Evidence supports the use of certain cognitive and behavioral rehabilitation strategies for individuals with TBI in particular circumstances. These interventions share certain characteristics in that they are structured, systematic, goal-directed, and individualized and they involve learning, practice, social contact, and a relevant context. It is important to recognize that a great deal of the scientific evidence to support the use of these approaches derives from relatively limited studies that should be replicated in larger, more definitive clinical trials.
What Are Common Models of Comprehensive, Coordinated, Multidisciplinary Rehabilitation for People With TBI, What Is Their Scientific Basis, and What Is Known About Their Short- and Long-Term Outcomes?
There are numerous approaches to TBI rehabilitation; most involve a traditional medical perspective. Common acute phase approaches include ICU/acute trauma and neurosurgical care, acute inpatient hospital rehabilitation, and subacute in-hospital care, such as coma management. Postacute approaches to TBI rehabilitation include home-based rehabilitation, outpatient rehabilitation programs, community re-entry programs, comprehensive day treatment programs, residential community reintegration programs, and neurobehavioral programs. Beyond the traditional medical approach, TBI rehabilitation also includes supported living programs, independent living centers, clubhouse programs, rehabilitation within schools, and vocational rehabilitation.
An extensive literature has examined the effectiveness of comprehensive rehabilitation programs for persons with TBI. Unfortunately, most studies are not rigorous from a methodological standpoint, so conclusions regarding effectiveness must be approached with caution. Indeed, critical analysis of the literature on TBI rehabilitation yield only a few studies that suggest effectiveness under limited conditions. A major mitigating factor is that research in the area of TBI rehabilitation is exceedingly difficult to conduct, and it has been difficult to obtain funding. Adequate sample sizes and appropriate comparison groups are difficult to achieve in a clinical, rehabilitation environment. Therefore, the fact that most research to date has not been rigorous must not be interpreted to imply that rehabilitation programs are not effective.
A major limitation within the field of TBI rehabilitation is the narrow focus of current medical restoration approaches; the focus tends to be on enhancing capabilities of persons with TBI to help them adapt to life circumstances. However, new models of rehabilitation emphasize the parallel importance of environmental modification in order to create enabling conditions for the individual. Unfortunately, enablement approaches are not yet common in the field of TBI rehabilitation, in part because of funding constraints. The current approaches to TBI rehabilitation are also limited by the fact that little attention has been paid to the needs of high-risk age groups (e.g., infants, adolescents, and the elderly) and their families. Similarly, there is little recognition that TBI is frequently a lifetime disability with varying rehabilitation needs over that lifetime. Improvements in the conceptual approaches to TBI rehabilitation are needed.
Another difficulty with current models of TBI rehabilitation pertains to the issue of access to rehabilitation services. Specifically, there is a wide discrepancy in the availability of TBI rehabilitation programs across geographic regions and a lack of knowledgeable professionals able to facilitate community-based rehabilitation. Frequently, there are problems accessing rehabilitation services in a timely manner, and major financial barriers make access to TBI rehabilitation services difficult for many individuals. These factors and others make it difficult for persons with TBI and their families to obtain the necessary community support and participate optimally in the rehabilitation process.
An additional shortcoming of current approaches to TBI rehabilitation involves limited opportunities for decision-making by persons with TBI and their families. Traditional medical rehabilitation environments often do not foster partnerships with persons with TBI or their significant others. Therefore, the current approaches frequently result in a sense of disenfranchisement due to a lack of shared participation in goal development and program design. In addition, information provided by clinicians to persons with TBI and their families is often insufficient. Fortunately, notable exceptions to this problem are beginning to emerge as rehabilitation environments start to adopt participatory action strategies for both research and treatment endeavors.
Based on the Answers to These Questions, What Can Be Recommended Regarding Rehabilitation Practices for People With TBI?
- Rehabilitation services should be matched to the needs, strengths, and capacities of each person with TBI and modified as those needs change over time.
- Rehabilitation programs for persons with moderate or severe TBI should be interdisciplinary and comprehensive.
- Rehabilitation of persons with TBI should include cognitive and behavioral assessment and intervention.
- Persons with TBI and their families should have the opportunity to play an integral role in the planning and design of their individualized rehabilitation programs and associated research endeavors.
- Persons with TBI should have access to rehabilitation services through the entire course of recovery, which may last for many years after the injury.
- Substance abuse evaluation and treatment should be a component of rehabilitation treatment programs.
- Medications used for behavioral management have significant side effects in persons with TBI, can impede rehabilitation progress, and therefore should be used only in compelling circumstances.
- Medications used for cognitive enhancement can be effective, but benefits should be carefully evaluated and documented in each individual.
- Community-based, nonmedical services should be components of the extended care and rehabilitation available to persons with TBI. These include but are not necessarily limited to clubhouses for socialization; day programs and social skill development programs; supported living programs and independent living centers; supported employment programs; formal education programs at all levels; case manager programs to support practical life skill redevelopment and to help navigate through the public assistance and medical-rehabilitative care systems; and consumer, peer support programs.
- Families and significant others provide support for many people with TBI. To do so effectively, they themselves should receive support. This can include in-home assistance from home health aides or personal care attendants, daytime and overnight respite care, and ongoing counseling.
- Rehabilitation efforts should include modification of the individual's home, social, and work environments to enable fuller participation in all venues.
- Special programs are needed to identify and treat persons with mild TBI.
- Specialized, interdisciplinary, and comprehensive treatment programs are necessary to address the particular medical, rehabilitation, social, family, and educational needs of young and school-age children with TBI.
- Specialized, interdisciplinary, and comprehensive treatment programs are necessary to address the particular medical, rehabilitation, family, and social needs of persons older than age 65 with TBI.
- Educational programs are needed to increase the degree to which community care providers are aware of the problems experienced by persons with TBI.
What Research Is Needed to Guide the Rehabilitation of People With TBI?
- Epidemiological studies on the risk factors and incidence of TBI are needed for different age groups, gender, and race.
- The relationship between substance abuse and TBI should be studied.
- Existing CDC surveillance systems based on hospital discharge summaries or death records should be expanded to include emergency department encounters in order to augment the current database for research.
- Studies of the placement of persons with TBI in nursing homes and psychiatric facilities are needed to clarify what constitutes appropriate placement.
- The epidemiology of mild TBI should be studied.
- The duration, natural history, and life-course manifestations (neurological, cognitive, social, psychological, economic, etc.) of mild, moderate, and severe TBI should be studied.
- Gender differences in survival rates, patterns of severity, and long-term manifestations of TBI should be studied.
- The consequences and effects of rehabilitation after TBI in the elderly should be studied.
- The experience of minority group members with TBI should be studied.
- Research training is needed in the areas of injury epidemiology and clinical research in order to enhance the quality of all research related to TBI.
- The time course of TBI should to be studied in animals with respect to injury severity, influence of age and gender, and effects of interventions.
- Research is needed on the appropriate timing of therapeutic interventions after TBI.
- Research is needed on the effectiveness of pharmacological interventions for the cognitive, behavioral, and emotional consequences of TBI.
- The neurobiology of TBI in humans should be studied with modern imaging techniques (e.g., positron emission tomography [PET] and functional magnetic resonance imaging [fMRI]) and correlated with neuropsychological findings.
- Promising treatments of TBI derived from animal studies should be tested in humans.
- The epidemiology and management of TBI in sports should be studied.
- Well-designed and controlled studies of the effectiveness of rehabilitation interventions are needed.
- Economic analysis of TBI, including major determinants of costs, is needed.
- Innovative rehabilitation interventions for TBI should be developed and studied.
- The predictors of quality of life for persons with TBI, their families, and significant others should be studied.
- Studies are needed to evaluate the relationship between specific cognitive deficits and global outcomes.
- Validation of generic health-related quality of life assessment instruments for use in TBI is needed, as well as the development and validation of TBI-specific instruments.
- Uniform standards and minimal data sets to describe injury type, severity, and significant interacting variables, which could provide a total injury profile across a continuum of recovery, should be developed.
- The relationship between the pathophysiology of TBI and the effectiveness of different interventions should be studied.
- The long-term consequences of TBI of varying severity, including the consequences of aging for a person with TBI, should be studied.
- The developmental impact of TBI in childhood with respect to the need for special education, mental health, and rehabilitation services should be studied.
- The effectiveness of community-based rehabilitation for persons with TBI should be studied.
- Severity risk-adjustment models for studies of persons with TBI should be established.
- The effectiveness of peer support for persons with TBI, their families, and significant others should be studied.
- Innovative study methodologies to assess the effectiveness of complex interventions for persons with TBI should be developed and evaluated.
- TBI is a heterogeneous disorder of major public health significance.
- Consequences of TBI can be lifelong.
- Given the large toll of TBI and absence of a cure, prevention is of paramount importance. Identification, intervention, and prevention of alcohol abuse and violence provide an important opportunity to reduce TBI and its effects.
- Rehabilitation services, matched to the needs of persons with TBI, and community-based nonmedical services are required to optimize outcomes over the course of recovery.
- Mild TBI is significantly underdiagnosed, and early intervention is often neglected.
- Persons with TBI, their families, and significant others are integral to the design and implementation of the rehabilitation process and research.
- Public and private funding for rehabilitation of persons with TBI should be adequate to meet acute and long-term needs.
- Access to needed long-term rehabilitation may be jeopardized by changes in payment methods for private insurance and public programs.
- Increased understanding of the mechanisms of TBI and recovery hold promise for new treatments.
- Well-designed and controlled studies are needed to evaluate benefits of different rehabilitation interventions.
- Basic and common classification systems of TBI are needed.
- The evaluation of TBI interventions will require innovative research methodologies.
- Funding for research on TBI needs to be increased.
The speakers listed above identified the following key references in developing their presentations for the consensus conference. A more complete bibliography prepared by the National Library of Medicine (NLM) at the NIH, along with the references below, was provided to the consensus panel for their consideration. The full NLM Bibliography is available at the following Web site: http://www.nlm.nih.gov/pubs/cbm/tbi.html.
- Hart T, Jacobs HE. Rehabilitation and management of behavioral disturbances following frontal lobe injury. J Head Trauma Rehabil 1993;8:1-12.
- Whyte J. Assessing medical rehabilitation practices: distinctive methodologic challenges. In: Fuhrer MJ, editor. The promise of outcomes research. Baltimore: Brookes; 1997. p. 43-59.
- Whyte J, Hart T, Laborde A, Rosenthal M. Rehabilitation of the patient with traumatic brain injury. In: DeLisa J, Gans BM, Bockenek, WL, Currie DM, Geiringer SR, Gerber LH, Rehabilitation medicine: principles and practice. 3rd ed. Philadelphia: Lippincott-Raven; 1998. p. 1191-1239.
- Whyte J, Laborde A, DiPasquale MC. Assessment and treatment of the vegetative and minimally conscious patient. In: Rosenthal M, Griffith ER, Kreutzer JS, Pentland B, editors. Rehabilitation of the adult and child with traumatic brain injury. 3rd ed. Philadelphia: FA Davis. In press.
EPIDEMIOLOGY OF TBI
- Centers for Disease Control and Prevention. Traumatic injury in the United States: an interim report to congress. Atlanta (GA): Centers for Disease Control and Prevention; in press.
- Krause J, McArthur D. Epidemiology of brain injury. In: Cooper PR, editor. Head injury. 4th ed. Baltimore: Williams & Wilkins; in press.
- National Center for Health Statistics. Data file documentation, national hospital discharge survey, 1980-1995. Rockville (MD): National Center for Health Statistics, Centers for Disease Control and Prevention; 1997.
- Sosin D, Sniezek JE, Waxweiller RJ. Trends in death associated with traumatic brain injury, 1979 through 1992: success and failures. JAMA 1995;273(22):1778-80.
CONSEQUENCES OF TRAUMATIC BRAIN INJURY
- Corrigan JD. Community integration following traumatic brain injury. Neurorehabilitation 1994;4:109-121.
- Corrigan JD, Smith-Knapp K, Granger CV. Outcomes in the first 5 years after traumatic brain injury. Arch Phys Med Rehabil 1998;79:298-305.
- Dijkers M. Measuring the long-term outcomes of traumatic brain injury: a review of the Community Integration Questionnaire. J Head Trauma Rehabil 1997;12(6):74-91.
- Dikmen SS, Temkin NR, Machamer JE, Holubkov AL, Fraser RT, Winn HR. Employment following traumatic head injuries. Arch Neurol 1994;51:177-186.
- Gervasio A, Kreutzer J. Kinship and family members’ psychological distress after traumatic brain injury: a large sample study.J Head Trauma Rehabil 1997;12(3):14-26.
- Gronwall D, Wrightson P. Delayed recovery of intellectual function after minor head injury. Lancet 1974;2:605-9.
- Hall KM. Functional assessment in traumatic brain injury. In: Rosenthal M, Griffith ER, Kreutzer JS, Pentland B, editors. Rehabilitation of the adult and child with traumatic brain injury. 3rd ed. Philadelphia: F.A. Davis. In press.
- Hall KM, Mann N, High WM, Wright J, Kreutzer JS, Wood D. Functional measures after traumatic brain injury: ceiling effects of the FIM, FIM+FAM, DRS and CIQ. J Head Trauma Rehabil 1996;12(5):27-39.
- Harrison-Felix C, Newton CN, Hall KM, Kreutzer JS. Descriptive findings from the traumatic brain injury model systems national data base. J Head Trauma Rehabil 1996;11(5):1-14.
- Kreutzer J, Gervasio A, Camplair P. Primary caregiver's psychological status and family functioning after traumatic brain injury. Brain Inj 1994;8(3):197-210.
- Kreutzer J, Serio C, Bergquist S. Family needs following brain injury: a quantitative analysis. J Head Trauma Rehabil 1994;(3):104-15.
- Levin HS, Culhane KA, Mendelsohn D, Lilly MA, Bruce D, Fletcher JHM, et al. Cognition in relation to MRI in head injured children and adolescents. Arch Neurol 1993;50:897-905.
- Lezak MD. Living with the characterologically altered brain injured patient. J Clin Psychiatry 1978;39:111-23.
- Sander AM, Kreutzer JS, Rosenthal M, Delmonico R, Young ME. A multicenter longitudinal investigation of return to work and community integration following traumatic brain injury. J Head Trauma Rehabil 1996;11:70-84.
- Satz P, Zaucha K, McCleary C, Light R, Asarnow R, Becker D. Mild head injury in children and adolescents: a review of studies (1969-1995). Psychol Bull 1997;122:107-31.
- Williams DH, Levin HS, Eisenberg HM. Mild head injury classification. Neurosurgery 1990;27:422-8.
MECHANISMS UNDERLYING RECOVERY FROM TRAUMATIC BRAIN INJURY
- Arnsten AFT, Smith DH. Pharmacological strategies for neuroprotection and rehabilitation following brain trauma. In: Stuss DT, Winocur G, Robertson IH, editors. Cognitive neurorehabilitation. Cambridge (UK): Cambridge Press. In press.
- Black JE, Jones TA, Nelson CA, Greenough WT. Neuronal plasticity and the developing brain. In: Alessi N, Coyle JT, Harrison SI, Eth S, editors. The handbook of child and adolescent psychiatry. Vol 6. New York: John Wiley & Sons; 1998. p. 31-53.
- Conti AC, Raghupathi R, Lee VMY, Trojanowski JQ, McIntosh TK. Experimental brain injury induces regionally distinct apoptosis during the acute and delayed post-traumatic period. J Neurosci. In press.
- Erb DE, Povlishock JT. Neuroplasticity following traumatic brain injury: a study of GABAergic terminal loss and recovery in the cat dorsal lateral vestibular nucleus. Exp Brain Res 1991;83:253-67.
- Greenough WT, Black JE, Klintsova AY, Bates KE, Weiler IJ. Experience and plasticity in brain structure: possible implications of basic research findings for developmental disorders. In: Broman S, et al., editors. Thechanging nervous system: consequences of early brain disorders. Oxford University Press. In press.
- Greenough WT, Comery TA, Irwin SI, Black JE, Weiler IJ. Discussion: synapse stabilization and fragile X protein synthesis in the rodent brain. In: Hann DM, et al., editors. Advancing research on developmental plasticity: integrating the behavioral science and neuroscience of mental health. Washington (DC): U.S. Government Printing Office. In press.
- Jones TA, Hawrylak N, Klintsova AY, Greenough WT. Brain damage, behavior, rehabilitation, recovery and brain plasticity. Mental Retardation and Developmental Disabilities Research Reviews. In press.
- McIntosh TK, Juhler M, Wieloch T. Novel pharmacologic strategies in the treatment of experimental traumatic brain injury. J Neurotrauma. In press.
- Phillips LL, Lyeth BG, Hamm RL, Reeves TM, Povlishock JP. Glutamate antagonism during secondary deafferentation enhances cognition and axodendritic integrity after traumatic brain injury. Hippocampus. In press.
- Phillips LL, Lyeth BG, Hamm RL, Povlishock JT. Combined fluid percussion brain injury and entorhinal cortical lesion: a model for assessing the interaction between neuroexcitation and deafferentation. J Neurotrauma 1994;11:641-56.
- Povlishock JT, Christman CW. The pathobiology of traumatically induced axonal injury in animals and humans: a review of current thoughts. J Neurotrauma 1995;12:555-64.
- Povlishock JT, Jenkins LW. Are the pathobiological changes evoked by traumatic brain injury immediate and irreversible? Brain Pathol 1995;5:415-26.
- Saatman KE, Murai H, Bartus RT, Smith DH, Hayward NJ, Perri BR, et al. Calpain inhibitor AK295 attenuates motor and cognitive deficits following experimental brain injury in the rat. Proc Natl Acad Sci U S A 1996;93:3428-33.
- Stuss DT, Pogue J, Buckle L, Bondar, J. Characterization of stability of performance in patients with traumatic brain injury: variability and consistency on reaction time tests. Neuropsychology 1994;8(3):316-24.
- Stuss DT, Stetham LL, Hugenholtz H, Picton T, Pivik J, Richard MT. Reaction time after traumatic brain injury: fatigue, divided and focused attention, and consistency of performance. J Neurol Neurosurg Psychiatry 1989;52:742-8.
COMMON COGNITIVE REHABILITATION INTERVENTIONS
- Aronow HU. Rehabilitation effectiveness with severe brain injury: translating research into policy. J Head Trauma Rehabil 1995;2:24-36.
- Ben-Yishay Y, Diller L. Cognitive remediation in traumatic brain injury: update and issues. Arch Phys Med Rehabil 1993;74:204-13.
- Damasio AR. Descartes' error. New York: Avon Books; 1994. Greenwood RJ, McMillan TM,Brooks DN, Dunn G, Brock D, Dinsdale S, et. al. Effects of case management after severe head injury. BMJ 1994;308:1199-1205.
- Haffey WJ, Abrams DL. Employment outcomes for participants in a brain injury work reentry program: preliminary findings. J Head Trauma Rehabil 1991;6:24-34.
- Helffenstein D, Wechsier R. The use of interpersonal process recall (PR) in the remediation of interpersonal and communication skill deficits in the newly brain injured. Clin Neuropsychol 1982;4:139-43.
- Mackay LE, Bernstein BA, Chapman PE, Morgan AS, Milazzo LS. Early intervention in severe head injury: long-term benefits of a formalized program. Arch Phys Med Rehabil 1992;73:635-41.
- Mann L. On the trail of process: a historical perspective on cognitive processes and their training. New York: Grune and Stratton; 1979.
- Merzenich M, Wright B, Jenkins W, Xerri C, Byl N, Miller S, et al. Cortical plasticity underlying perceptual, motor, and cognitive skill development: implications for neurorehabilitation. Cold Spring Harbor symposia on quantitative biology, Vol. 41, Cold Spring Harbor Laboratory Press; 1996.
- Niemann H, Ruff RM, Baser CA. Computer-assisted attention retraining in head-injured individuals: a controlled efficacy study of an outpatient program. J Consult Clin Psychol 1990;58:811-7.
- Ponsford JL, Kinsella G. Evaluation of a remedial programme for attentional deficits following closed-head injury. J Clin Exp Neuropsychol 1998;10(6):693-708.
- Prigatano GP. Principles of Neuropsychological Rehabilitation. New York: Oxford University Press. In press.
- Ruff RM, Mueller J, Jurica PJ. Estimating premorbid functioning levels after traumatic brain injury. Neurorehabilitation 1996;7:39-53.
- Vygotsky LS. Mind in society: the development of higher psychological processes. Cole M, John-Steiner V, Scribner S, Souberman E, editors and translators. Cambridge (MA): Harvard University Press; 1978.
- Wilson BA, Evans JJ, Emslie H, Malinek V. Evaluation of NeuroPage: a new memory aid. J Neurol Neurosurg Psychiatry 1997;63(1):113-5.
- Ylvisaker M, Feeney T. Collaborative brain injury intervention: positive everyday routines. San Diego: Singular Publishing Group; 1998.
OVERVIEW OF TBI REHABILITATION MODELS
- Corcoran MA, Gitlin LN. The role of the physical environment in occupational performance. In: Christiansen C, Baum C, editors. Occupational therapy: enhancing performance and well-being. Thorofare (NJ): Slack, Inc; 1997.
- Dresser R. Mentally disabled research subjects: the enduring policy issues. JAMA 1996;276(1):67-72.
- Haimowitz S, Delano SJ, Oldham JM. Uninformed decisionmaking: the case of surrogate research consent. Hastings Center Report 1997;27(6):9-16.
- Institute of Medicine. Disability in America: a national agenda for prevention. Pope AM, Tarlov AR, editors. Washington (DC): National Academy Press; 1991.
- Institute of Medicine. Enabling America: assessing the role of rehabilitation science and engineering. Brandt EN Jr, Pope AM, editors. Washington (DC): National Academy Press; 1997.
- Keyserlingk EW, Glass K, Kogan S, Gauthier S. Proposed guidelines for the participation of persons with dementia as research subjects.
- Kramer MS, Shapiro SH. Scientific challenges in the application of randomized trials. JAMA 1984;252:2739-45.
- National Center for Medical Rehabilitation Research. Research plan for the National Center for Medical Rehabilitation Research. Washington (DC): National Institutes of Health; 1993.
- Ottenbacher KJ. Why rehabilitation research does not work (as well as we think it should). Arch Phys Med Rehabil 1995;76:123-9.
- Shamoo AE, O'Sullivan JL. The ethics of research on the mentally disabled. In: Monagle JF, Thomasma DC, editors. Health care ethics: critical issues for the 21st century. Gaithersburg (MD): Aspen Publishers Inc; 1998. p. 239-50.
- Whitehead J. The design and analysis of sequential clinical trials. New York: John Wiley & Sons; 1997.
- Whyte J. Toward a methodology for rehabilitation research. Am J Phys Med Rehabil 1994;73:428-35.