5
Prevention of Injury-Related Disability

In recent years, injury has begun to receive long overdue recognition as a major public health problem. Attention has focused primarily on the toll of lives lost and on the resultant economic costs.

INJURY IN AMERICA: MAGNITUDE OF THE PROBLEM

Each year more than 142,000 people in the United States are killed by injuries, the nation's fourth leading cause of death. Injury is the number one killer among people younger than age 45, who incur four-fifths of all injuries. In 1985, indirect costs of forgone productivity due to premature deaths caused by injury were estimated to total $47.9 billion (Rice et al., 1989).

The toll of injury-caused deaths would be much higher, however, if not for advances in the medical and surgical management of trauma and the regionalization of transport and treatment systems. These and other developments have substantially reduced the injury mortality rate during the last several decades. Between 1975 and 1988, the age-adjusted death rate due to unintentional injury decreased from 45.4 to 35.8 per 100,000 people (National Safety Council, 1989).

This impressive progress in averting death among injury victims does not translate into absolute success. Large and increasing numbers of survivors of once-fatal injuries sustain lifelong impairments and functional limitations that can greatly diminish their ability to carry out the major roles in which they had previously engaged. Consequently, gains in lives saved by advances in the care of injury victims have contributed to the prevalence of disabling conditions in the United States.

Each year an estimated 2.3 million Americans are hospitalized as the



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Disability in America: Toward a National Agenda for Prevention 5 Prevention of Injury-Related Disability In recent years, injury has begun to receive long overdue recognition as a major public health problem. Attention has focused primarily on the toll of lives lost and on the resultant economic costs. INJURY IN AMERICA: MAGNITUDE OF THE PROBLEM Each year more than 142,000 people in the United States are killed by injuries, the nation's fourth leading cause of death. Injury is the number one killer among people younger than age 45, who incur four-fifths of all injuries. In 1985, indirect costs of forgone productivity due to premature deaths caused by injury were estimated to total $47.9 billion (Rice et al., 1989). The toll of injury-caused deaths would be much higher, however, if not for advances in the medical and surgical management of trauma and the regionalization of transport and treatment systems. These and other developments have substantially reduced the injury mortality rate during the last several decades. Between 1975 and 1988, the age-adjusted death rate due to unintentional injury decreased from 45.4 to 35.8 per 100,000 people (National Safety Council, 1989). This impressive progress in averting death among injury victims does not translate into absolute success. Large and increasing numbers of survivors of once-fatal injuries sustain lifelong impairments and functional limitations that can greatly diminish their ability to carry out the major roles in which they had previously engaged. Consequently, gains in lives saved by advances in the care of injury victims have contributed to the prevalence of disabling conditions in the United States. Each year an estimated 2.3 million Americans are hospitalized as the

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Disability in America: Toward a National Agenda for Prevention FIGURE 5-1 Cost of injury by class of injury in the United States, 1985. Source: Rice et al., 1989. result of injuries; an additional 54 million sustain injuries requiring outpatient medical care or resulting in one or more days of restricted activity without medical attention (Rice et al., 1989). These figures translate into 16 injury-caused hospitalizations for every death due to injury in the United States. Moreover, for every injury death an additional 381 people sustain less severe injuries that do not require hospitalization. A one-year accounting of the economic costs associated with the estimated 57 million people who sustain nonfatal injuries in the United States provides some perspective on the enormity of the problem. Rice and colleagues (1989) estimate that about $108 million, or two-thirds of the total cost of all injuries incurred in 1985, could be attributed to nonfatal injuries (Figure 5-1). Nearly 60 percent of these costs result from reduced or forgone productivity—the market value of lost work and housekeeping days due to permanent or temporary disability. Another way to assess this cost is to tabulate lost time from work or other productive activity, a measure known as life years lost. For every 100 injuries in a given year, the contributions of 9 life years are lost in the same year. The bulk of this loss is attributable to the high incidence of injury and injury-caused disabling conditions among people between the ages of 15 and 44, which encompasses the most productive period of the human life span. Injuries sustained by people in this age group in 1985 resulted in 2.7 million life years lost, or $44 billion in lost productivity.

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Disability in America: Toward a National Agenda for Prevention In addition to high morbidity costs, nonfatal injuries result in significant direct costs spent for personal health care and rehabilitation. In 1985, $43.3 billion, or $764 per injured person, was spent for hospital and nursing home care, physicians' services, inpatient and outpatient rehabilitation services, and other health care expenditures related to the injury. Although economic costs do not reflect the pain and suffering associated with injury or the burden placed on family and friends, they do provide a quantifiable measure of the public health significance of injuries and can be useful in guiding choices among competing programs of primary, secondary, and tertiary prevention. There is little question that nonfatal injuries represent a major economic burden to society. Ranked by cause, cumulative losses are greatest for injuries incurred in falls and motor vehicle crashes, totaling $35.6 billion and $30.2 billion, respectively (Figure 5-2). Poisonings, burns, and injuries associated with the intentional and unintentional use of firearms are also costly to society, totaling $4.1 billion, $2.4 billion, and $2.2 billion, respectively. Nevertheless, these three categories account for a small percentage of the total economic costs of nonfatal injury relative to falls and motor vehicle injuries. Other common causes of injuries include stabbings and other assaults, injuries involving machinery, and sports-related injuries. The ranking of costs according to causes of nonfatal injuries does not mirror the ranking of mortality costs associated with specific causes of injury (Figure 5-3). The two leading contributors to mortality costs are FIGURE 5-2 Lifetime costs of non-fatal injury, United States, 1985.

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Disability in America: Toward a National Agenda for Prevention FIGURE 5-3 Lifetime costs of injury by cause— deaths vs. nonfatal injury, United States, 1985. motor vehicle crashes ($18.4 billion) and incidents involving firearms ($12.2 billion). In contrast, falls, which rarely are fatal and account for less than 1 percent of the mortality costs of injury, are the major source of lifetime costs due to nonfatal injuries. Motor vehicle crashes are also a major source of costs due to nonfatal injuries, whereas firearm-related injuries account for about 2 percent of the total. The role of firearms in contributing to the population of people with disabling conditions needs to be carefully evaluated. Improved data collection, discussed elsewhere in this report, is important to this evaluation and the development of effective interventions. CENTRAL NERVOUS SYSTEM INJURIES The remainder of this chapter concentrates on spinal cord injury (SCI) and traumatic brain injury (TBI). Per-person economic costs associated with these traumatic injuries to the central nervous system are among the highest costs for injury-caused pathologies and impairments. Both types of injury often result in significant physical, neurophysical, and psychosocial deficits that cause long-term disabling conditions, which necessitate extensive

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Disability in America: Toward a National Agenda for Prevention treatment and rehabilitation of affected individuals. Although this chapter focuses on SCI and TBI, much of the discussion, such as that pertaining to the management of care, the development and evaluation of preventive interventions, the need for a stronger emphasis on behavioral and psychosocial determinants of disability, and the importance of tertiary prevention, is applicable to the broader fields of injury control and disability prevention. In addition, focusing on SCI and TBI is not meant to imply that disabling conditions resulting from injuries to other body systems merit less attention. Orthopedic injuries, for example, including serious injuries to the upper and lower extremities, result in significant impairment and disabling conditions. For many people with these injuries, recovery can be long and expensive, and even optimal treatment may not prevent permanent impairment involving chronic pain, loss of motion or contracture of joints, and deformity or loss of limb. Many of the strategies recommended in this chapter for reducing disability associated with TBI and SCI are relevant to the prevention of disability resulting from orthopedic injuries as well. Traumatic Brain Injury: Incidence and Outcomes Studies published within the past 15 years have reported incidence rates for traumatic brain injury in the United States ranging from a low of 180 per 100,000 people in San Diego County, California, to a high of 367 per 100,000 in the Chicago area (Annegers et al., 1980; Frankowski et al., 1985; Whitman et al., 1984). Differences in incidence are attributable to differences in case definition and case ascertainment methodologies, as well as differences in the age, sex, and, in particular, racial composition of study populations. The only national data available are from the National Head and Spinal Cord Injury Survey, which estimated a rate of 200 hospitalizations per year per 100,000 people (Kalsbeek et al., 1980). Applying this annual rate to the projected 1990 U.S. population yields an estimate of 500,000 expected new cases of TBI. Using an average of 10 percent mortality implies that each year approximately 450,000 people survive a TBI, the consequences of which range from slight to persistent vegetative state (Frankowski et al., 1985). Annual direct and indirect costs associated with traumatic head injury have been estimated at $12.5 billion (1982 dollars) (Grabow et al., 1984). The acute severity of TBI has traditionally been measured using the Glasgow Coma Scale (GCS), a 13-point scale ranging from 3 to 15. GCS scores are based on three neurological responses: eye opening, verbal responses, and motor responses. In general, scores below 8 imply severe head injury; scores between 9 and 12 indicate moderately severe injury; and scores of 13 to 15 indicate mild or minor head injury. Although several studies have demonstrated a high correlation between GCS and

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Disability in America: Toward a National Agenda for Prevention chances of survival, the ability of the GCS to predict long-term quality of life is less clear (Uzzell et al., 1987) and requires further evaluation (Eisenberg, 1985). The majority of individuals hospitalized for TBI are diagnosed as having a mild, uncomplicated closed head injury. Very little is known about the consequences of these minor head injuries, although increasing evidence suggests that they often result in persistent headaches and other physical symptoms, as well as significant psychosocial and behavioral problems, including difficulty in performing at one's job (Casey et al., 1986; Dikmen et al., 1986; Edna and Cappelen, 1987; Rimel et al., 1981; Wrightson and Gronwall, 1984). The most comprehensive study of mild head injury published to date indicates that of 424 individuals examined 3 months after injury, 78 percent complained of persistent headaches, 50 percent had difficulties with memory, and 34 percent of those employed prior to the injury had not yet returned to work (Rimel et al., 1981). Given the high incidence of minor head injuries, their social and economic impacts are considerable. Considerably more is known about the consequences of moderate and severe TBI. Each year approximately 70,000 to 90,000 individuals sustain moderate to severe TBIs that may result in lifelong potentially disabling conditions. The estimated 2,000 who sustain the most severe disabling conditions survive in a persistent vegetative state, a term referring to their lack of response to external stimuli (Rice et al., 1989). Several studies have documented the sequelae of severe TBI, leading to the characterization of TBI as the ''silent epidemic" because sequelae are primarily neurobehavioral. Although limitations in physical function can be significant following severe TBI, cognitive and psychosocial consequences are more common and contribute significantly to lifelong disabling conditions and poor quality of life (Bachy-Rita, 1989). Common cognitive sequelae include deficits in attention, memory, general intellectual performance, and linguistic and perceptual function. A vast array of emotional disturbances and personality changes have also been documented, ranging from depression and withdrawal to disinhibition and euphoria. Behavioral disturbances have become increasingly recognized as a major limiting factor in recovery and return to work following TBI (Levin et al., 1982). Estimates of the proportion of people who return to work following moderate and severe closed head injury vary widely due to differences in injury definition, preinjury characteristics of the patient population, and lengths of follow-up. A recent study has shown that only 12 percent of patients with severe head injuries had returned to work within 6 months; 29 percent had returned within a year (MacKenzie et al., 1987). Other studies have demonstrated even lower rates for the most severely injured (Jacobs, 1988; Oddy et al., 1985; Weddell et al., 1980). Rates of return to work are somewhat higher for individuals sustaining moderately severe injuries, ranging from 30 percent

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Disability in America: Toward a National Agenda for Prevention to 50 percent at 3 to 6 months postinjury, and 50 percent to 60 percent at one year (Oddy and Humphrey, 1980; Rimel et al., 1982). Profiles of individuals who are at highest risk of sustaining TBI are consistent in the research literature (reviewed by Annegers et al., 1980; Frankowski et al., 1985; and Whitman et al., 1984). Adults aged 15 to 24 years are at highest risk of sustaining a traumatic brain injury, but the elderly, aged 65 and over, and very young children are also at high risk. Compared with females, males are twice as likely to sustain TBI; thus, more than 70 percent of all TBIs occur among males. Demographic studies indicate that the incidence of TBI is highest for nonwhite, urban populations (ranging from 250 to 400 per 100,000). White populations living in rural and suburban areas, on the other hand, have the lowest rates (200 per 100,000). Motor vehicle crashes constitute the leading cause of TBI, accounting for one-third to one-half of all new cases. The second leading cause of TBI is falls, accounting for an additional 20 percent to 30 percent of total incidence. Intentional injuries also represent a major cause, although the contribution of assaults to the overall incidence of head injuries varies among populations according to socioeconomic composition. Studies of inner city Chicago and Bronx County, New York, for instance, indicate that motor vehicle crashes and violence contribute equally to the incidence of head injury (Cooper et al., 1983; Whitman et al., 1984). Given the force involved in motor vehicle crashes, resulting TBIs generally lead to a higher percentage of diffuse brain damage. Falls and blows to the head, on the other hand, are associated with a higher frequency of hematomas and focal paralysis. Spinal Cord Injury: Incidence and Outcomes The incidence of SCI is considerably lower than TBI; however, SCI substantially affects both the individual and society. Each year an estimated 10,000 to 20,000 people in the United States sustain an SCI (2.8 to 5 cases per 100,000 people). These incidence figures translate into a prevalence of approximately 200,000 people in any given year (Kraus, 1985). As with TBI, however, estimates of SCI incidence and prevalence vary considerably across studies because of differences in methods of case ascertainment and in characteristics of study populations. On average, lifetime costs for medical treatment and rehabilitation range from an estimated $210,379 to $751,854 (1989 dollars) per individual, depending on the extent of the injury. The average present value of forgone earnings due to premature death and disability ranges from $151,250 to $308,000 per person. Total lifetime costs of all new cases of SCI in 1989 will amount to an estimated $6 billion (1989 dollars) (DeVivo, 1989). In contrast to TBI, the major impairments resulting from spinal cord

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Disability in America: Toward a National Agenda for Prevention injury are muscle paralysis and loss of sensation. The distinction is made between paralysis involving both the arms and the legs (quadriplegia) and that of the legs only (paraplegia). Quadriplegia results from injury to one of the eight cervical segments or neck region of the spinal cord. Paraplegia results when the injury is confined to the thoracic, lumbar, or sacral regions of the cord. In general, the higher the injury is to the cord, the more severe the impairment will be. An estimated one-half of all SCIs result in quadriplegia (Stover and Fine, 1986). More than 95 percent of paraplegic individuals achieve independence in specific self-care activities and mobility in a wheelchair (Young et al., 1982). Quadriplegic individuals often require frequent physical assistance in performing personal care tasks such as feeding, dressing, and bathing but may still be independent in the performance of communicative and cognitive activities such as operating a computer. SCIs are also characterized according to the extent of neurologic injury. Complete injuries, or plegia, result in complete loss of sensation or motor control. In contrast, people with incomplete lesions, or paresis, may retain some sensation and motor power, with the degree of impairment depending on the extent of the lesion. Overall, approximately one-half of all SCIs are complete lesions (Stover and Fine, 1986). Studies of patients treated at Regional SCI Centers have reported 5-year employment rates ranging from about 14 percent for quadriplegics with complete lesions to 33 percent for paraplegics with incomplete lesions (Stover and Fine, 1986). Again, estimates are influenced by the length of follow-up and the preinjury characteristics of the patient population. A recent study (Whiteneck et al., 1989) reported that 63 percent of a select group of high-level quadriplegic individuals on respirators had survived 9 years and were leading fulfilling lives. Older adolescents and young adults are at highest risk of SCI. Compared with females, males are at three to four times the risk of sustaining SCI. Very little is known about the correlation between SCI injury and race or ethnicity. The few studies that have examined this relationship report conflicting results (Kraus, 1985). Motor vehicle crashes of all types constitute the major cause of SCI in the United States, accounting for between 30 percent and 60 percent of all SCIs. Falls constitute the second leading cause, accounting for an additional 20 percent to 30 percent of all cases. Acts of violence (primarily involving firearms) and sports or recreational activity also contribute significantly to the incidence of SCI, each accounting for an estimated 5 percent to 20 percent of all SCIs. Diving is the major cause of sports-related SCI, being implicated in two-thirds of all sports-related SCI reported by the Model Spinal Cord Injury Systems Program. Football injuries also contribute greatly to SCI in the United States (Stover and Fine, 1986). The extent of injury is related to cause. Nearly one-third of all falls and

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Disability in America: Toward a National Agenda for Prevention motor vehicle-related spinal cord injuries result in incomplete quadriplegia; an additional 15 percent to 20 percent result in complete quadriplegia. SCIs due to acts of violence, on the other hand, more often result in neurologically complete paraplegia. Sports-related SCIs appear to be the most incapacitating; more than 90 percent result in quadriplegia, one-half of which are complete (Stover and Fine, 1986). Temporal Changes in Patterns of Injury and Outcome Medical and surgical advances in the acute management of trauma, combined with regionalization of transport and treatment systems, have contributed to a decrease in the injury fatality rate and accompanying changes in patterns of injury severity. For example, during the past 50 years, patterns of survival following SCI have changed dramatically. In the 1950s only those with low-level paraplegia were generally expected to survive. Today, even people who sustain high-level quadriplegia are surviving, and if properly cared for in a specialized, comprehensive program, can lead fulfilling lives (Whiteneck et al., 1989). Further, within the past 10 years, there have been discernible shifts in the proportion of patients with neurologically incomplete injuries. The National SCI Database has documented that while the proportion of all SCI patients who are quadriplegics remained fixed at about 50 percent between 1973 and 1983, the proportion with neurologically incomplete lesions increased from 38 percent to 54 percent. This increase is attributable, in large part, to improved emergency medical services, including better management of the patient at the scene of the injury and during transport to the hospital. Only two studies have examined temporal trends in the incidence and outcome of head injury. One, an examination of the incidence of head injury in Olmsted County, Minnesota, between 1935 and 1975, found an overall increase in incidence rates but a constant mortality rate (Annegers et al., 1980). The increase was largest for less severe injuries, leading the authors to speculate that the trend resulted from an increased propensity over the years to treat or hospitalize people with minor head injuries. More recently, a study of people hospitalized for head injuries in Maryland reported an 18 percent increase in hospitalizations between 1979 and 1986. The greatest increase (nearly 200 percent), however, was among the most severely injured (MacKenzie et al., 1990). This increase was accompanied by a small decline in the hospital case fatality rate and an increase in the proportion discharged to extended care or rehabilitation facilities. Among those sustaining severe TBI, there was a decrease of 8 percentage points in the proportion discharged to home (from 31 percent to 23 percent) and a 5 percentage-point decrease in fatalities (53 percent to 48 percent). These changes were accompanied by a 15 percentage-point jump (9 percent to 24 percent), or a nearly threefold increase, in the proportion of patients discharged to extended care facilities.

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Disability in America: Toward a National Agenda for Prevention Caution must be exercised in interpretation, but these trends are evidence that improvement in emergency medical services and acute management of head injuries during the past 10 years has substantially increased the proportion of individuals who survive with severe head injury, placing increased demands on families, the health care system, and society at large. SURVEILLANCE: COUNTING THE SURVIVORS AND ASSESSING THEIR NEEDS The preceding review points to many inadequacies in our knowledge of the incidence and outcomes of both TBI and SCI. Better data are needed to identify important shifts in trends and patterns of injury and to build a foundation for better planning and evaluation of injury control efforts. The following discussion describes ongoing efforts to address these needs and recommends areas for further research and development. The Centers for Disease Control (CDC) has defined surveillance as the "ongoing systematic collection, analysis, and interpretation of health data needed to plan, implement, and evaluate public health programs." The timely collection and reporting of these data are important features of an effective surveillance system (Centers for Disease Control, 1988a). Although originally developed to monitor and control epidemics of infectious diseases such as smallpox and cholera, surveillance systems are now applied more broadly to study patterns of incidence and outcomes of noninfectious diseases. As for infectious diseases, these efforts are intended to aid the design of effective strategies for primary and secondary prevention of selected conditions in high-risk groups. Graitcer (1987) has outlined the specific attributes of injury surveillance systems and discusses the advantages and limitations of alternative approaches. Population-based information on injuries and events related to injuries is available from a variety of sources. Examples of national injury data bases designed for the surveillance of injuries of specific etiologies include the National Accident Sampling System, the National Electronic Injury Surveillance Systems, the Survey of Occupational Injuries and Illnesses, and the National Crime Survey. Although criticized for incompleteness of coverage, limited content, and high cost, these surveillance systems have provided important and useful epidemiological information on TBI and SCI, including etiologies (National Research Council, 1987). Because these systems only track injuries of specific etiology, however, they do not provide complete enumeration of all head and spinal cord injuries. Surveys by the National Center for Health Statistics are another source of data on nonfatal injuries, although they are not designed specifically for the purpose of injury surveillance. Two specifically relevant surveys are the National Health Interview Survey (NHIS) and the National Hospital

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Disability in America: Toward a National Agenda for Prevention Discharge Survey (NHDS). These instruments have the potential to provide uniform data on all neurological injuries of a general severity class regardless of cause or etiology. The NHIS is a probability sample of households in the civilian noninstitutionalized population of the United States. The core survey provides data on the incidence of injury and acute conditions, duration and types of limitation of activity, persons injured, hospitalizations, physician visits, and the prevalence of selected chronic conditions. Although the NHIS is one of the few sources of population-based data on the incidence and outcome of minor or mild head injuries that do not result in hospitalization, it contains very little data on circumstances or cause of injury. Injuries reported in the NHIS are classified into four broad categories: (1) injuries involving moving motor vehicles, (2) injuries occurring at home, (3) injuries occurring at work, and (4) other. This classification is clearly inadequate for identifying the major external cause of disabling injuries including falls, firearms, and injuries involving machinery. Also, there is inadequate information collected for classifying injuries as to their intent. Finally no attempt is made in the interview to ascertain the circumstances of the injury, for example, involvement of alcohol, use of protective devices such as seat belts, car seats, airbags, and special clothing and eyewear. Without this important information, it is difficult to appropriately identify and target interventions for reducing the occurrence of injuries. The NHIS is also a potentially useful source of information on the use of and unmet need for rehabilitation services. Although the current survey asks questions pertaining to the frequency of physician visits and hospitalizations, it does not collect information about the use of specific inpatient and outpatient rehabilitation services. The core NHIS survey should be expanded to include questions pertaining to the circumstances and cause of injury to help improve our knowledge of injury etiology. In addition, a comprehensive supplement to the NHIS on incidence, medical care, rehabilitation, and disability related to injury is needed and should be considered as one of the survey's annual special topics. The NHDS is an important source of national estimates of the incidence of neurological injuries severe enough to require hospitalization. It consists of hospital discharge abstracts uniformly collected for a probability sample of approximately 200,000 patients treated in nearly 600 short-stay, nonfederal hospitals. Data conform to the Uniform Hospital Discharge Data Set. The recent development of a computerized conversion table that maps ICD-9CM coded discharge diagnoses into widely used scores denoting the severity of injuries (i.e., the Abbreviated Injury Scale) has enhanced the usefulness of

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Disability in America: Toward a National Agenda for Prevention Condition or System of Care What Is Known What Needs to be Known   Legislative authority for employment of people with disabilities was recently enacted. The effect of legislative action should be evaluated in return to employment by people with SCI and TBI. Psychological Severe depression is uncommon in SCI in the hospital and early discharge period. The incidence of depression, suicide, and other self-destructive behaviors over time is not known in SCI and TBI.   Disruptive behavior that is disabling is common in TBI in the early discharge period. The natural course of recovery from behavioral dysfunction in TBI requires study.   Frustration and hopelessness are felt to contribute to medical complication in SCI and disability. Interventions based on careful monitoring of psychological adjustment postinjury require study.   Some behaviors that are disruptive to function are controlled with psychotropic agents. The effects of psychotropic agents and other interventions require evaluation in TBI. Social Most individuals with SCI are quite active. High quadriplegic individuals on respirators may achieve a significant quality of life. Normative data are needed for quality of life in SCI and TBI based on severity of impairment and disability.   Severe SCI and TBI individuals are a significant burden of care for the family. The longitudinal needs of attendant care and respite care based on severity of disability require study.   Of SCI individuals in systems of care, 94% return directly to the community from rehabilitation hospitals. A great proportion of TBI individuals require alternative placement from the rehabilitation hospital. Quality of life and cost differences for attentive placement in SCI need to be determined.   Peer counseling through independent living centers has (perceived) value to individual adjustments. Standards development and effectiveness measurement need to be carried out in TBI alternative care settings.

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Disability in America: Toward a National Agenda for Prevention Condition or System of Care What Is Known What Needs to be Known   Cost data of longitudinal care will soon be available. Factors such as assertiveness training, education, and advocacy which result in effective interventions should be studied.     Limitation of various categories of insurance for essential services and equipment should be determined. lesion into a complete lesion, which not only increases impairment but also diminishes the prognosis for recovery (National Research Council, 1985). Associated Injury Persons with central nervous system trauma often have multiple injuries to other organs, and these associated injuries can contribute to further complications and impairment. For example, recent studies indicate that as many as 82 percent of patients with TBI sustain associated injuries (Bontke, 1989). These associated injuries include fractures of long bones, skull, and spine; chest and abdominal injuries; and peripheral nerve damage (Stover and Fine, 1986). The high incidence of associated injuries is related to the major role that motor vehicle crashes play in causing central nervous system trauma. Finally, about 10 percent of TBI patients have associated SCI, and 10 percent of SCI patients have associated severe TBI. Compared with those who damage only one organ of the central nervous system, both groups sustain greater impairment and subsequent disability. A recent report indicates that up to half of SCI patients may have a mild head injury, but the incidence of long-term impairment in these cases is not known (Davidoff et al., 1988). A reduction in overall impairment and mortality may be achievable by improving the skill with which TBI and SCI patients are managed (National Research Council, 1985). Complications (Secondary Conditions) The effect of medical complications on individual function is significant. Patients with SCI and TBI often have similar complications that contribute to impairment and functional limitation, including complications to the cardiopulmonary-vascular, neuromusculoskeletal, and genitourinary-gastrointestinal systems; however, considerably more is known about the incidence and potential for intervention

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Disability in America: Toward a National Agenda for Prevention in patients with SCI than in those with TBI (Young et al., 1982; Stover and Fine, 1986). In large part, this lack of information on TBI is attributable to a more mature system of neurological classification and data collection on SCI (Stover and Fine, 1986). For TBI, classification and data collection are relatively new and present more complicated problems (Bachy-Rita, 1989). Consequently, efforts to quantify the effectiveness of various intervention strategies in TBI lag behind similar efforts in SCI. On closer inspection, certain types of complications that appear to be similar are substantially different in the SCI and TBI patient. For example, heterotopic ossification, a cause of contractures, occurs predominantly in the upper extremities in TBI, whereas it occurs predominantly in the lower extremities in SCI (Venier and Ditunno, 1971). Spasticity during the acute phase of TBI may frequently require casting to prevent contracture (Weintraub and Opat, 1989), but this is seldom required in SCI. Other complications are seen exclusively in TBI, such as cognitive dysfunction, linguistic and cranial nerve deficits, personality change, hydrocephalus, and seizures. Disseminated vascular clotting and neuroendocrine disorders are also prominent in TBI (Bontke, 1989; National Research Council, 1985). Deep vein thrombosis is a very common medical complication and occurs in 80 percent to 100 percent of completely paralyzed SCI patients, leading to pulmonary embolism, one of the most frequent causes of early death. Recent studies provide evidence of effective methods of prevention, and these methods should be used more widely (Merli et al., 1988; Green et al., 1988). Occurring in 60 percent to 80 percent of high-level quadriplegic patients, pulmonary complications such as atelectasis and pneumonia are another major cause of mortality and morbidity. Improved understanding of the underlying mechanisms could point the way to more effective interventions (Fishburn et al., 1990). Infection of the urinary tract is another common complication in SCI and TBI patients who use indwelling Foley catheters. However, advances in the use of intermittent catheterization and improved measures of follow-up in persons with SCI have been reported to reduce renal disease as a major cause of death in the long-term patient (Stover and Fine, 1986). Recurrent urinary tract infection and complications, however, continue to be a source of functional limitation and, at times, are associated with autonomic hypertension and increased spasticity. Impaired bowel function is common in both groups of patients because of immobility. Contractures associated with muscle weakness and imbalance, spasticity, and heterotopic ossification constitute a type of medical complication that can lead to significant impairment and functional limitation. Limited shoulder motion resulting from contractures, for example, may make it impossible for an individual to put on a shirt or reach overhead; walking is severely compromised if strength recovers but the knees and hips are permanently

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Disability in America: Toward a National Agenda for Prevention fused in flexion, not allowing proper standing and ambulation. A recent study (Yarkony and Sahgal, 1987) reported an 85 percent incidence of contractures in craniocerebral trauma cases transferred to a rehabilitation unit; frequency was related to duration of coma. In SCI and TBI patients, contractures are most effectively prevented when bed positioning and therapies to maintain motion are instituted early and are continued throughout all phases of recovery. Pressure sores are perhaps the most commonly cited medical complication associated with SCI. Nutritional deficiency, which may be prevalent early in the conditions of TBI and SCI patients, contributes to tissue breakdown and has been found to correlate with outcome (Ragnarsson, in press). Recurrent pressure sores do occur in a small proportion of patients after discharge, and improved strategies for prevention during this phase are needed. However, proper education and training in combination with assistive equipment can be effective in preventing this condition. SCI patients suffer severe pressure sores almost twice as often before arriving at a model system care facility as after entry into the facility (Young et al., 1982). Basic and clinical research is needed in conjunction with improved surveillance data to develop and improve effective interventions for the prevention, management, and reduction of injury-related damage to the central nervous system. In particular, emphasis should be given to the reduction of medical complications that contribute to short- and long-term disability in persons with SCI and TBI. Acute (Medical) Rehabilitation Beginning a course of rehabilitation necessitates the assessment of a person's physical and mental status. In terms of the committee's disability model, it is important to establish the stage in the progression, the risk factors, and the relevant preventive interventions. Depending on the type of impairment, for example, different interventions can be used during rehabilitation to help prevent the development of functional limitations. In persons with SCI, reduced motor power is the major cause of functional limitation. Among persons with TBI, acute weakness of one side occurs in 18 percent of cases (Eisenberg, 1985) and usually improves without contributing to significant limitation. Most functional limitations associated with severe head injury are attributable to neurobehavioral impairments (Levin, 1985; Bleiberg et al., 1989; Diller and Ben-Yishay, 1989). Virtually all studies of rehabilitation in SCI patients are concerned with the capacity for self-care and mobility and how they relate to the severity of the neurological deficit (Ditunno et al., 1987; Welch et al., 1986; Yarkony et al., 1988). Strengthening exercises have been shown to increase motor

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Disability in America: Toward a National Agenda for Prevention power in partially paralyzed muscles and are therefore important in preventing certain SCI impairments from progressing to functional limitations. In addition, recent studies (Ditunno et al., 1987, 1989a, 1989b) have shown sufficient recovery of motor power in the arms of quadriplegic patients to enable significant improvement in function during rehabilitation and at the time of one-year follow-up. Recently reported research (Bracken et al., 1990) has demonstrated that treatment with methylprednisolone within 8 hours of spinal cord injury significantly improved the recovery of motor and sensory function. Because most people with acute SCI are admitted to a hospital within the critical 8-hour period, this intervention has great potential for reducing disabling conditions. The study, however, did not measure functional improvement. Improved cardiovascular conditioning of paraplegic individuals is an important part of rehabilitation and can be achieved through aerobic exercises, especially in young people. Such conditioning enables many to participate in wheelchair sports and to walk in braces with crutches. Functional electrical stimulation (FES) has been promoted as having several potential applications. These include increasing strength and endurance and preventing osteoporosis in paraplegic and quadriplegic individuals, although these claims have not been evaluated rigorously (Ragnarsson et al., 1988). Another application of FES is in implantable electrodes to enable upper extremity grasping and thus self-feeding by persons with high-level quadriplegia (Peckham et al., 1986). Applications of FES in ambulation (Marsolais and Kobetic, 1988) and prevention of pressure sores (Davidoff et al., 1988) show early promise but require further development and evaluation. Individuals with complete paralysis of leg muscles can learn to get in and out of bed, bathe, dress, use the toilet, and dress without assistance by learning certain skillful maneuvers and using adaptive equipment. A high level of independence can be achieved with the aid of adaptive equipment and training in feeding, dressing, bathing, using a wheelchair, and driving a car. Even people with paralysis in all limbs can reduce dependency through the use of technology that permits such individuals to unlock doors, turn on lights, and operate a phone or a computer. The opportunity for enhancing functional capacity and independence in people with paralysis is great, meriting an expanded research and development effort on new assistive technologies. Educational programs that help individuals perform self-care activities are an integral part of the rehabilitation process, which begins in the acute phase of injury and continues throughout the life course. Modification of procedures, tasks, and schedules according to the needs of the individual facilitates functioning on the job and in other social contexts. Eventually, these modifications should become the exclusive responsibility of the person with the potentially disabling condition. Another example is learning to

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Disability in America: Toward a National Agenda for Prevention control bladder and bowel dysfunction, which occurs in most individuals with injury to the spinal cord. Control of these functions is an important aspect of rehabilitation. With skillful training, more than 90 percent of SCI patients are capable of bladder and bowel continence. Training also includes education on how to avoid bladder infection and prevent other potentially disabling conditions. People with TBI often have more extensive impairment of the nervous system than do people with SCI because TBI can result in focal or diffuse lesions in any part of the brain. Paralysis, spasticity and rigidity, ataxia, and other disorders affecting coordination in the hands or legs can lead to functional limitation. Posttraumatic involvement of the sensory, labyrinth, or cerebellar-mediated systems results in ataxia in 20 percent to 30 percent of people sustaining diffuse brain injury (Weintraub and Opat, 1989). In these cases, functional limitation is common because of difficulties in hand performance of fine motor skills and in gross motor skills such as walking. Although the true incidence of cranial nerve involvement is unknown, loss of the sense of smell occurs in 7 percent to 25 percent of all head injury patients (Berrol, 1989). Because any of the cranial nerves may be involved, impairments caused by head injury include defective smell, vision, taste, and hearing and thus often limit the amount of information available from the environment; however, the effects of these impairments on function are unclear. As many as 40 percent of all people with TBI experience problems in communication due to partial aphasia. Other linguistic limitations such as naming, sentence repetition, and word fluency occur in an additional 30 percent or more of cases (Levin and Goldstein, 1989). Because little is known about the natural course of these limitations, interventions that might improve function are lacking. Assessment of the neurobehavioral impairments that contribute to the greatest functional limitations in TBI is a considerable research need. Cognitive impairments, which may be grouped into problems with attention, concept formation, executive function, self-regulation of affect, and memory, have been identified and occur in the majority of patients with head injury (Diller and Ben-Yishay, 1989). However, information on how these impairments affect function, particularly self-care, is very limited. Finally, when motor impairment occurs along with neurobehavioral dysfunction, traditional instruments for evaluating function and the results of intervention may be of limited value. For example, the reason why some individuals do not dress themselves may not be because of paralysis but because they sit on the bed without initiating any movement (Diller and Ben-Yishay, 1989). Although training individuals with cognitive deficits to become more functional has yielded some encouraging results, better tests to measure

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Disability in America: Toward a National Agenda for Prevention executive function, process function, and acceptance and awareness need to be developed (Diller and Ben-Yishay, 1989). In summary, acute (medical) rehabilitation is an important component of the systems approach to acute care and rehabilitation. However, because impairments in strength, tone, coordination, and information transmission may be superimposed on cognitive and behavioral impairments, better indexes that integrate impairment, functional limitation, and disability need to be developed to determine the effectiveness of rehabilitation interventions. These assessments must be applied to the proliferating alternative treatment e environments in TBI care, such as day treatment and cognitive rehabilitation. Basic and clinical rehabilitation research is needed in the prevention, management, and reduction of the motor impairment associated with SCI and the neurobehavioral impairment associated with TBI. In particular, more thorough study is needed of motor recovery in SCI patients and the effectiveness of various interventions such as surgery, drugs, and rehabilitation in reducing impairment and improving function. Future research should focus on potential applications of functional electrical stimulation, development and testing of new assistive technologies, and the causal relationships between TBI and the senses of smell, vision, taste, and hearing, as well as the causal relationship between TBI and aphasia. Better tests to measure higher cortical function (e.g., executive function, process function, and acceptance and awareness) are needed to facilitate evaluation of rehabilitation effectiveness. These indexes should integrate measures of impairment, functional limitation, and disability. An obvious need is for consistent classification and categorization of TBI severity. Such classification can serve as a basis for prognosis and permit reliable assessments of the effectiveness of therapeutic interventions in reducing impairments. Psychosocial and Vocational Rehabilitation and Lifelong Comprehensive Follow-up Psychosocial and vocational interventions during acute and rehabilitation phases are directed at helping the individual and family members cope with the sudden and potentially devastating effects of the affected person's altered self-image and self-esteem. Prior to the patient being discharged into the community, the goal of such interventions is to offer vocational opportunities, with early assessment, and prepare the individual and family members for the adjustment to the affected person's altered but possibly independent lifestyle.

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Disability in America: Toward a National Agenda for Prevention As functional recovery improves during the first year or more after the injury, the focus of rehabilitation shifts from medical intervention and physical restoration to psychosocial and vocational adaptation. The ultimate goal of psychosocial and vocational rehabilitation is community reintegration. For children and adolescents, this may mean returning to school. For adults, returning to work is an important component of reintegration. It is important to emphasize that services aimed at community reintegration must consider not only attributes and limitations of the injured individual, but also the social, educational, and vocational systems in which the individual will function. It has long been recognized that individuals vary greatly in their ability to adapt to a functional limitation. As discussed in Chapter 3, variability in outcome depends on a host of personal and environmental factors, some of which are mutable. Although a comprehensive review of the necessary components of an integrated, coordinated approach to community reintegration is beyond the scope of this report, a brief summary of some of the more important elements follows. The reader is referred to Chapters 18-20 of Traumatic Brain Injury (Bach-y-Rita, 1989) for a more complete discussion of the issues. Transitional living centers offer community-based residential programs that provide an opportunity for individuals to relearn and practice, in a protected but real-life environment, the skills necessary for living independently and productively. Although most individuals who sustain SCI return home following inpatient rehabilitation, the individual with severe TBI often requires the services of a transitional living center after discharge from an acute rehabilitation center. When the structure of a residential program (e.g., a transitional living center) is no longer needed, individuals may still require additional training and support from day programs designed to prepare them further for reintegration into society. For individuals who continue to require assistance with activities of daily living, in-home services may be required. Vocational services are crucial for ensuring that return-to-work goals are achieved. These services may include counseling and work readiness evaluations, job training, job placement, work-site modification, and postemployment services intended to ensure satisfactory adjustment to employment. Independent living centers offer valuable resources throughout the process of recovery from TBI and SCI. These centers are primarily staffed by individuals with disabling conditions and provide a supportive network for individuals who want to achieve an independent lifestyle. The importance of independent living centers to the welfare of people with disabling conditions cannot be overemphasized. (Independent living centers are described in more detail in Chapter 7.)

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Disability in America: Toward a National Agenda for Prevention Providers and consumers alike express concerns that existing psychosocial and vocational services do not adequately meet the needs of clients (National Council on the Handicapped, 1986). This is particularly true for services required by individuals with TBI. Special education, for example, often focuses on the needs of children with developmental disabilities. The child coping with the effects of a head injury is thought to have needs different from those of the child with a developmental disability. Yet school systems often do not recognize these special needs and do not have the necessary resources to address them. Similarly, vocational rehabilitation specialists often are not trained to specifically respond to the needs of the head-injured adult who may have no physical limitations but, because of inappropriate behavior or memory problems, has difficulty keeping a job. Existing and alternative strategies for psychosocial and vocational rehabilitation of individuals with SCI and TBI need to be developed and assessed for their effectiveness. This will require longitudinal studies to measure both outcome and program costs. Research on outcomes of psychosocial and vocational rehabilitation should include measures of quality of life and not limit the definition of successful outcome solely to return to work, school, or household maintenance. Community-based programs, independent living centers, projects with industry, and alternative programs should be considered in research and evaluation projects. Despite some questions about the efficacy of the increasing number of alternative strategies for rehabilitating people with SCI or TBI, it is clear that a wide range of community services are needed. It is also clear that many people who need these services do not receive them, and that quality psychosocial and vocational rehabilitation services aimed at reintegrating persons with disabling conditions into the community and back to work should be available to those who need them. The number of day programs is increasing but is still insufficient to meet the more rapidly increasing demand for such services (Jacobs, 1988). A major conclusion of the Los Angeles Head Injury Survey was that the rehabilitation needs of many persons with traumatic brain injury go unmet because of the geographic and financial inaccessibility of services. The shortage of services is even more acute in rural areas of the country. Rehabilitation, especially neurobehavioral rehabilitation and psychosocial services, is rarely covered by private health insurance. The extent of coverage under Medicaid varies greatly from state to state, but, generally, Medicaid funding is restricted to inpatient medical rehabilitation and physical therapy. Financial support for transitional living centers and vocational

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Disability in America: Toward a National Agenda for Prevention rehabilitation is more limited. Strict and often confusing eligibility requirements for vocational rehabilitation programs further limit accessibility to these services, especially for those with TBI. Means for removing financial barriers that limit accessibility to rehabilitation services need to be studied. Such studies should evaluate the extent to which current public and private compensation programs create nonproductive disincentives for rehabilitation and resumption of a productive role in society. In addition, the lack of public and private insurance coverage for neurobehavioral rehabilitation and psychosocial and vocational services should be examined. Multidisciplinary research is needed to develop a better understanding of the multiple factors, both medical and nonmedical, that contribute to disability and the overall quality of life following TBI and SCI. Given the problems associated with the availability and accessibility of services, the family often assumes the major responsibility for providing care and support to individuals with SCI or TBI (Jacobs, 1988). This responsibility, often lifelong, may have a major impact on members of the family, as well as on the family unit as a whole (Bach-y-Rita, 1989). Separation and divorce and financial difficulties are among the problems commonly reported by families of persons who have sustained major trauma. These problems are especially acute for families of persons with TBI (Brooks, 1984). Additional problems arise when the primary caregiver dies. Society must face the challenge of providing appropriate and adequate support to individuals with major physical and neurobehavioral disabling conditions. Addressing this need will require educating employers of the rights and capabilities of people with disabling conditions associated with TBI and SCI. Expanded education programs are needed to inform the public about the legal rights of people with disabling conditions, including their rights to work and their guarantees of full participation in society, as is consistent with provisions of the Americans with Disabilities Act. Education programs are also needed to instruct employers in the special capabilities and needs of persons with TBI and SCI. In summary, there is a growing consensus that universal access to coordinated systems of care that integrate treatment from the site of injury through long-term community follow-up is essential for mitigating the short-term effects of SCI and TBI and for reducing long-term disability. However, the establishment of national and regional networks of SCI and TBI systems of care that link state and local systems will need to be tested. For

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Disability in America: Toward a National Agenda for Prevention TBI, testing of the entire system, its components, and overall effectiveness is needed; for SCI, more rigorous control is required. Closer working relationships between industry and vocational rehabilitation programs should also be fostered. Coordinated systems of care that integrate treatment from the site of injury through long-term community follow-up are needed for mitigating the short-term effects of SCI and TBI and for reducing long-term disability. Several studies have underscored the lack of adequate funding for injury prevention research and practice (National Research Council, 1985; Rice et al., 1989). Although considerable progress has been made in accurately describing and establishing injury as a major public health concern, greater resources must be directed to the prevention of injuries by applying existing knowledge and by developing new intervention strategies. Available resources for injury prevention research and practice should reflect the importance of injury as one of the leading causes of disability. Consonant with the recommendations included in Injury in America (National Research Council, 1985), Cost of Injury in the United States (Rice et al., 1989), and Injury Prevention (U.S. National Committee for Injury Prevention and Control, 1989), a Center for Injury Control is needed and should be established within the Centers for Disease Control to serve as a focal point for national injury prevention programs and activities. This would be an important component of a national disability prevention program.