A model systems approach to the rehabilitation of people with traumatic brain injury.
A model system of care is a coordinated and integrated multi-disciplinary approach to rehabilitation that provides innovative health care services to people with traumatic brain injury commencing from the time of injury and spanning the rest of their lives, as needed (Thomas, 1988; Ragnarsson, Thomas, & Zassler, 1993). Healthcare professionals, health policy experts, and survivors and their families have come to realize that the most effective approach to the rehabilitation of people with TBI is to provide, from the time of injury, diverse, timely, and specialized medical and rehabilitation services delivered in a systematic and coordinated fashion. These services can be delivered at a rehabilitation center, in the person's community, or at home, depending on the nuture of the service and the person's need.
Basic components of a model system of care for people with TBI include emergency medical services (EMS), intensive acute medical care, comprehensive coordinated rehabilitation services, psychosocial and vocational services, and long-term community followup (Thomas, 1988). In addition to these patient care components, model systems must also include components that are crucial to everyone, such as community-based prevention efforts and patient/family educational programs and research.
The needs of people with TBI are complex and are modified by factors such as variable neuropathology (i.e., where the brain is damaged, how much tissue has been damaged, etc.), variable severity of impairement, pre-inquiry personal characteristics, and age. These basic considerations underlie the types and timing of services required to implement a model program. In many instances, model systems must cross institutional boundaries if they are to provide the diverse array of services required by people with TBI (e.g., coma management, long-term care, transitional living, home care, etc.). Despite the fact that so many "players" are involved, the ultimate decisions regarding rehabilitation management must reside with the survivor, family, and the professional directing and coordinating the model system. While most rehabilitation service providers are well acquainted with inpatient and outpatient rehabilitation services, they are not as familiar with the EMS and acute care components of a model system, which are defined below:
* EMS. The evaluation and treatment of trauma patients in the field by emergency medical technicians and paramedics of EMS consist of assessing and monitoring of level of consciousness and of respiratory and cardiac status, management of shock, recording of Glasgow Coma Scale score, airway establishment and maintainance, provisions of supplemental oxygen as needed, control of hemorrhage, head and spine immobilization, as indicated, administration of intravenous crystalloid infusion, as indicated, and recording of vital signs, medical history, patient care information, and treatment procedures.
* Acute Care. Upon the patient's arrival in the emergency room, a multi-disciplinary trauma team must assess the severity of the patient's injury (e.g., examine the patient's level of consciousness, respiratory and cardiac status, etc.) This information is used in the triage that determines the need for supportive treatments (e.g., ventilatory assistance, cardiac monitoring) and the need for further diagnostic workups (e.g., CT scan, MRI, etc.). The major goals of this phase of care are quick stabilization of life-threatening conditions, careful monitoring of recovery during the first days following admission, and early introduction of aggressive rehabilitation services. The team approach to the acute care of TBI patients is crucial tp successful intervention. Members of the trauma team include a neurosurgeon, orthopedic surgeon, oral-facial-maxillo surgeon, and an anesthesiologist. Other specialists see the patient, as needed, to provide appropriate interventions as soon as medically feasible. Those patients with minor TBI are treated, kept for observation, and, depending on their mental and physical status, are either admitted to the hospital or sent home. The families of patients who are discharged must be given specific written instructions to return promptly if the patient develops symptoms indicating a deteriorating condition. Patients and family members should be given educational materials (e.g., a pamphlet describing the effects of mild brain injury). Obviously, those who are not sent home are admitted to the hospital. Patients with significantly impaired levels of consciousness need to have neuro-radiological studies (i.e, computed tomography, (CT); magnetic resonance imaging, (MRI); and skull x-ray) completed immediately. Depending on the outcome of these studies and the patient's clinical status, the patient is either moved directly to the operating room for immediate surgical procedures or admitted to the intensive care unit (ICU) or acute service. All efforts must be made to eliminate the secondary causes of brain injury by such measures as maintaining adequate oxygenation, limiting hemorrhages, preventing elevated intracranial pressure, maintaining adequate blood pressure, and inactivating toxic compounds released from damaged tissues. Measures to prevent secondary cerebral insults are continued as above, with the addition of actions to prevent post-traumatic seizure during the acute post-injury period, monitoring for electrolyte abnormalities precipitated by the head injury (e.g., hyponatremia secondary to syndrome of inappropriate antidiuretic hormone), monitoring for evidence of autonomic dysfunction, correcting anemia and, if necessary, continuous monitoring of intracerebral pressure. Appropriate antibiotics are administered for prophylaxis in cases of penetrating injuries or in documented infections. Intensive medical management is continued in the various neurosurgical or surgical units. Patients have continued followup by appropriate trauma team members for management of associated injuries, such as fractures, damage to internal organs, or peripheral nerve damage. Attention is given to the significantly increased metabolic demand of TBI patients and treatment with parenteral or nasogastric supplementation is provided if oral feeding is not feasible.
* Comprehensive Impatient Rehabilitation. Once the patient's medical condition has stabilized and the immediate crisis has passed, rehabilitation services are initiated. These services are frequently provided to patients while they are still being treated in the acute neurosurgical service. These services help to prevent the adverse complications of immobilization and to initiate early physiatric therapeutics. A physiatric examination ensues and appropriate recommendations are made to the admitting service (usually neurosurgery) regarding such issues as body positioning, bowel and bladder management, nutrition, skin management, proper bed or mattress prescription, etc. If deemed appropriate, physical, occupational and/or speech therapy is initiated. In addition, early assessment of cognitive status by a neuropsychologist can facilitate rehabilitation planning.
Some of the issues that are important considerations with regard to the delivery of inpatient and outpatient rehabilitation services to people with TBI will now be discussed. As noted, rehabilitation services must commence as soon as feasible, to facilitate the process of recovery and to prevent unnecessary physical limitations, medical complications, and behavioral dysfunction. Following discharge from the acute care hospital, people with TBI require varying degrees of treatment and followup. Some patients require inpatient rehabilitation for a combination of physical, cognitive, and behavioral problems, followed by a period of outpatient rehabilitation that may include services from a single discipline, from several disciplines, or day treatment. Severely impaired persons might require long periods of rehabilitation designed to reduce the probability of secondary complications while the patient is in a coma (e.g., contractures, aggressive management to facilitate recovery from coma, and comprehensive rehabilitation following the resolution of coma). Some less severely injured people may benefit from outpatient rehabilitation services alone. All patients need to be integrated into their communities as early as possible; this involves the development of community integration skills during rehabilitation, linkage with identified community-based services, and transition to work or to school. In order to accomplish this, complex networking with community-based service providers, vocational rehabilitation service, schools, nurses, employers, and insurance carriers is needed.
The major long-term difficulties encountered by people with TBI are not primarily physical, but instead are cognitive, behavioral, and emotional. Thus, the challenge to a TBI model system of care is to provide a broad range of services addressing the full range of needs of persons with TBI. Further, because the cognitive, behavioral, emotional, and social problems of some people do not emerge until they encounter the stressful demands of returning to community/home roles, the full range of needs of many people with TBI model system must be able to maintain contact with patients to identify delayed-onset problems and to provide early prophylactic interventions for patients with a wide range of impairments. For example, the model system needs to be able to track mildly-impaired persons before their deficits precipitate unnecessary functional breakdown as well as the moderately-to-severely impaired persons, who are more typically served by established rehabilitation programs. Since the needs of patients may change or evolve as their environments change, ongoing followup and linkage to community-based services is crucial to the implementation of this component. Followup is critical to the care of the person with TBI, as cognitive/behavioral problems may render patients susceptible to dysfunction when changes occur in their post-injury environment. Thus, an essential ingredient of any model system is the ability to maintain contact with patients to ensure health maintenance and community integration.
At any given time, the inpatient rehabilitation program of a model system of care must be able to serve diverse patients ranging from those who are slowly emerging from coma to those who are independent in activities of daily living (ADL), some of whom remain sufficiently cognitively-compromised to preclude their discharge home without further cognitive/behavioral rehabilitation. In addition, the rehabilitation staff must be able to confront and mediate pressures to decrease costs by discharging patients quickly. Early discharge may create an undue burden for the patient, family, and rehabilitation program. The burden on the patient and the family stems from the decreased time available in the protective environment of the institution to adjust to the physical, cognitive, and emotional consequences of the injury and to integrate newly learned skills. The burden on the program resides in the need to strengthen servides that support the individual's continued recovery of function in his or her own community after hospital discharge by providing medical followup and outpatient services that are comprehensive, timely, and integrated. These services must link the patient to resources in the community and quickly respond to his or her evolving needs, without fostering unnecessary dependence on the institution. Given that the length of stay of inpatient rehabilitation is decreasing, the quality and diversity of outpatient rehabilitation programs take on added significance. Thus, outpatient programming is a crucial component of a model system of care, as it involves the applocation (i.e., generalization, and continued learning) of skills acquired during inpatient rehabilitation. The goal of these programs is to maximize the physical, social, and vocational well-being of patients after discharge.
* Outpatient Rehabilitation. Once inpatient goals have been attained, or the patient has achieved a level of stability where intensive inpatient rehabilitation is no longer required, discharge plans are made and the outpatient rehabilitation program is prescribed to meet the needs of the patient and family by the physiatrist, with input from the rehabilitation team. The transition from inpatient to outpatient care emphasizes continuity of the treatment plan and of team communication. Continuity of care is assured through interactions between the inpatient and outpatient teams and the coordination of communication, which is facilitated by either a social worker, a case manager, or by any other designated member of the rehabilitation team. The diversity and severity of the impairements that are secondary to TBI dictate that programming be comprehensive, (i.e., the needs of those with severe physical and cognitive impairements must be addressed with as much depth and intensity of programming as the needs of those whose physical impairements are mild but who have severe and slowly resolving cognitive impairements). Thus, patients present the team with combinations of both physical and cognitive deficits that require intensive, comprehensive outpatient programs. Those patients with minimal physical deficits but with significant cognitive deficits that interfere with community living and/or return to work or school are best served by either a day program or an intensive program of cognitive remediation services provided by a combination of neuropsychologists, speech pathologists, or occupational therapists. Factors that appear to differentiate between those in need of a day program as opposed to comprehensive outpatient services include the extent to which the individual requires supervision, the individual's level of cognitive functioning, the severity and diversity of the person's cognitive deficits, and the extent to which the patient is aware of his/her deficits.
There are several innovations in re-habilitation care that are practiced by one or more of the currently funded NIDRR TBI model system programs and RSA regional comprehensive TBI centers. These include the following:
* Many programs have initiated combined neurosurgery, rehabilitation medicine, neuroradiology multispecialty rounds, and case conferences to ensure that all aspects of the patient's condition are being promptly and effectively treated.
* Peer support and information for family members of the recently injured patient is provided during the early days and weeks of hospitalization.
* TBI admissions are managed as specified in brain injury protocols, which have been collaboratively developed by designated personnel from the trauma, neurosurgery, and rehabilitation medicine services. The major goals of these TBI protocols are the quick stabilization of life-threatening conditions, careful monitoring of recovery during the first days of post admission and early introduction of aggressive rehabilitation services. The neurosurgical team has available to it a broad range of state-of-the-art diagnostic services and management techniques (e.g., inter-cranial pressure monitors, cardiac monitors, respirators, etc.).
* An attending physiatrist with experience with acute TBI is consulted on all new TBI admissions to the Trauma Center within 24 hours of admission to ensure continuity of care and the early involvement of rehabilitation professionals. Following this consultation the physiatrist writes orders for appropriate rehabilitation services and monitors patient progress daily.
* To obtain relevant information about the person's cognitive status (i.e., gross assessment of the nature of overt cognitive deficits), a neuropsychologist completes brief mental status evaluations on TBI patients who are admitted to the acute neurosurgery service. This information is useful in developing a rehibilitation plan for patients early in their hospitalization.
* All members of the interdisciplinary rehabilitation team must be able to incorporate the nature and extent of the patient's cognitive deficits into their treatment regimen. Comprised rate of learning, impaired memory, and attention skills are clearly going to impact the rate of learning (i.e., progress, and the extent of generalization). Therefore, cognitively impaired TBI patients are provided with memory books, an essential therapeutic tool for the patient and one that provides an opportunity for the patient's family to become actively involved in the patient's rehabilitation. In addition, orientation groups can be organized for patients who exhibit persistent disorientation, pervasive confusion, confabulation, and varying degrees of anterograde and retrograde memory difficulties. In some programs, group problem-solving programs have been designed for higher functioning inpatients and recently discharged outpatients who demonstrate increased resolution of orientation and memory difficulties. Using a group-game format, patients are presented with conceptual tasks requiring reasoning (Waxman and Gordon, 1992).
* A significant proportion of patients go through periods of agitation and/or aggression as they emerge from coma and as their sensorium clears. These situations require specialized staff training and the development of specific protocols designed to implement a coordinated team approached to neurobehavioral dysfunction. This phase of recovery requires the provision of one-to-one nursing to provide patients with the required level of supervision.
* Case management and coordination services are provided to patients and their families.
* Alcohol and substance abuse prevention and treatment programs are integretable into rehabilitation program. This is a new component of rehabilitation programs, and, given the high association between neurotrauma and substance abuse, it is one that cannot be ignored. Unfortunately, there are few model programs available that can serve as templates for others. Facts about alcohol use in general and problems associated with use following brain injury (e.g., lowered seizure threshold, secondary injury, interaction with medications) need to be consolidated into these programs. Treatment must incorporate the fact that cognitive deficits will modify learning, behavioral change, and generalization.
* Linkage to independent living centers (ILC's) as well as to chapters of National Head Injury Foundation are provided to maximize independence and reintegration into community life.
* Linkages are established with state vocational rehabilitation services to facilitate determination of eligibility for services and optimal matching of vocational goals to the client's interests and abilities.
* Ambulatory patients with limited physical impairments are presented the opportunity to participate in physical conditioning and thereapeutic exercise programs. In addition to providing the benefits of exercise, the physical conditioning program plays an important role in overcoming the fatigue associated with brain injury as well as in improving self-concept and confidence.
* A group-education approach is offered for patients' families. Discussion topics for these propgrams can include TBI causes and symptoms, seizure precautions, medication management, and alcohol and substance abuse. These programs should be designed to provide patients and their families information and training neededd to ensure optimal health and successful community living; enable patients and family members to understand the patho-physiology of TBI, the accompanying sequealae and the stages of recovery; assist patients and family members in learning to prevent secondary complications of TBI and to manage cognitive impairments and behavioral changes; and afford patients and family members with opportunities to express their feelings and concerns in a supportive environment.
* Patients and families are provided with assistance in applying for benefits (e.g., SSI, SSDI, private disability insurance, public assistance, medicare, etc.).
* A business advisory group has been established in some programs to increase employers' understanding of TBI, to explore innovative hiring and employment practices, and to provide education about the application of the Americans with Disabilities Act to TBI survivors.
* To facilitate the transition to home and community, community reentry excursions can be offered to patients. As part of the community reentry program, patients need to be instructed how to get around their communities. Patients can be given "in vivo" functional training in such domains as shopping, going to restaurants, banking, and other activities. In urban environments this training can also involve instruction on how to access the public transportation system (e.g., how to use the lifts on buses, lock down the wheelchairs, interpret maps and schedules).
An often neglected component of a model system is injury prevention, which is needed to decrease the incidence of TBI. A multifaceted prevention program is aimed at an increase in seat belt and helmet use, prevention of falls, safe diving, proper and decreased use of firearms, reduction in drunk driving, and promotion of safe driving habits. The first target audience--children and adolescents, is reached through visits to schools; adults are reached through the use of the media.
Prevention programs are presented to junior and senior high school students in a variety of forums: large assemblies, health or physical education classes, driver's education classes, and others. Prior to discussion by the prevention team members, audiences are shown the videotape, Harms Way, which provides a clear message about the long-term effects of traumatic brain injury caused by motor vehicles, drinking, diving, and action sports. Following the film prevention team members lead a discussion with the audience and include their firsthand experience with traumatic brain injury--its etiology and its physical, emotional, and social consequences. After the formal presentation, team members remain available for personal exchanges of concerns and experiences. The prevention program is vital to educating those in the high-risk category about the effects of trauma and motivating them to take protective measures, while also serving to stimulate public awareness and support. The goals of increased safe driving, increaed seat belt and helmet use, and taking protective measures when participating in action sports are clearly the key to the premise that "the only cure for traumatic brain injury is preventing the injury."
Traumatic brain injury significantly impacts on the patient and family in a myraid of complex often interacting ways. The only cost effective way to provide interventions which can steadily address the needs of TBI survisors and their families is to provide an integrated, coordinated system of care.
(1.) Thomas, J.P. (1988). The evolution of model systems of care in traumatic brain injury. Journal of Head Trauma Rehabilitation, 3, 1-5.
(2.) Ragnarsson, K.T. Thomas, J.P. & Zazler, N.D. (In Press). Model system of care for individuals with traumatic brain injury. Submitted to the Journal of Head Trauma Rehabilitation.
(3.) Waxman, R. & Gordon, W.A. (1992). Expanding applications of cognitive remediation: Acute rehabilitation units and low functioning patients. NeuroRehabilitation, 2, 62-67.