accuracy of this estimate.”? Given these limitations, some variation in future estimates of the
prevalence of TBI-related disability is expected.

Incidence

According to NHDS data, the annual incidence rate of TBI hospitalizations has been declining
since 1975, when it peaked at 234 per 100,000 population (500,000 cases). During 1990-1995,
the mean annual incidence rate for persons hospitalized with TBI and survived was 99 per
100,000 population (260,000 cases). Hospitalization incidence patterns mirrored mortality rate
patterns — the highest rates were among persons 15-24 years of age and persons over age 65.
Based on preliminary data from the Colorado TBI Registry and Follow-up System,”*”” we can
estimate that each year, approximately 35 percent (80,500) of the 230,000 hospitalized survivors
of TBI experience the onset of long-term disability. A small but unknown proportion of the more
than 1 million persons with TBI who are not hospitalized may also experience long-term
disability. If we assume this proportion is only 1 percent (existing data indicate it is probably
greater), an additional 10,000 persons might have long-term disability. Thus, the estimated
number of persons who become disabled each year from TBI is between 80,000 and 90,000.

Public Health Goals

The data in this report clearly demonstrate the importance of traumatic brain injury as a public
health problem. Consequent to these injuries, each year more than 50,000 Americans die, nearly
230,000 are hospitalized and survive, and an estimated 80,000 to 90,000 experience the onset of
long-term or lifelong disability. We have much work to do in these areas: primary prevention,
acute care and rehabilitation, and improved data systems. This work requires that we better
define groups with an increased risk of injury or adverse outcomes based on population
characteristics, e.g., age, sex, and race or ethnicity.

Primary Prevention

Primary prevention of TBI is an important goal of public health efforts. Accomplishing this goal
requires attention to each of the major external causes of these injuries: transportation, violence,
and falls.

¢ Transportation crashes are the leading cause of TBI-associated death among women and
persons under 15 years of age. Fortunately, the rate of TBI-associated death due to
transportation crashes has decreased approximately 40 percent since 1980. This drop is likely
because of a combination of factors: an increase in seat belt and child safety seat use, an
increase in the number of vehicles equipped with air bags, and a decrease in the incidence of
driving while intoxicated. These positive changes should receive continued support. In
addition, recent changes in speed limits and in seat belt and helmet use requirements should
be evaluated to determine their impact on TBI incidence and death.

TBI in the United States: A Report to Congress Page 16


Figure 5. Traumatic brain injury-related death rates
by cause and race, United States, 1994*

{J White . .
African Americans

have a much
greater risk of
dying from firearm-
related traumatic
brain injury than
do people of other
races.

BB African-American

(J Other

Rate per 100,000

Falls Other cause

Cause of injury

Firearms Transportation’

* Age-adjusted to 1990 U.S. population

Fatal and Nonfatal Injuries in Seven States, 1994

With financial and technical support from CDC for statewide TBI surveillance systems, seven
States (Arizona, Colorado, Minnesota, Missouri, New York [excluding New York City],
Oklahoma, and South Carolina) compiled data for TBI-related hospitalizations and deaths that
occurred in 1994. As a result, these States have been able to provide more complete descriptions
of the incidence, severity, causes, and outcomes of TBI currently occurring among their residents.
During 1994, the seven States had 32,112 reported cases of TBI collectively; among persons with
these injuries, 5,442 (16.9 percent of all reported TBIs) died without being admitted to a hospital,
while 26,670 (83.0 percent) were admitted. Among those who were hospitalized, 1,802 (5.6
percent of all TBIs) died while receiving acute care. Thus, a total of 7,244 TBIs (22.6 percent of
all reported TBIs) were fatal.

The annual unadjusted incidence rate of TBI for all seven States combined was 90.9 per 100,000
population (91.8 per 100,000, age-adjusted to the 1990 U.S. population). The crude rate of
hospitalizations for TBI in the seven States combined was 75.5 per 100,000. The overall TBI-
related death rate was 20.7 per 100,000 (Figure 6). In an assessment of State-specific rates of
TBI, serious nonfatal injuries requiring hospitalization were far more common than injuries
resulting in death in all seven States. The median age at the time of injury was 32 years. The
incidence rate of TBI was highest among persons 75 years of age and older (191.1 per 100,000)
and among persons 15-24 years (145.1 per 100,000) (Figure 7). Most TBIs (21,423 or 66.7
percent) occurred among males, with the rate among males (124.1 per 100,000) being about
twice the rate among females (59.1 per 100,000).

TBI in the United States: A Report to Congress Page 10


15. MacKenzie EJ, Edelstein SL, Flynn JP. Hospitalized head-injured patients in Maryland:
incidence and severity of injuries. Maryland Med J 1989;38:725-32.

16. Kalsbeek WD, McLaurin RL, Harris BS, Miller JD. The National Head and Spinal Cord
Injury Survey: major findings. J Neurosurg 1980;53:S19-24.

17. Kraus JF, McArthur DL. Epidemiologic aspects of brain injury. Neurologic Clinics
1996;14(2):435-50

18. Department of Health and Human Services. Federal Interagency Head Injury Task Force
Report. Washington, D.C.: Department of Health and Human Services, 1989.

19. Thurman DJ, Sniezek JE, Johnson D, et al. Guidelines for Surveillance of Central Nervous
System Injury. Atlanta: Centers for Disease Control and Prevention, 1995.

20. Gabella B, Hoffman RE, Marine WW, Stallones L. Urban and rural brain injuries in
Colorado. Ann Epidemiol 1997;7:207-12.

21. Thurman DJ, Jeppson L, Burnett CL, Beaudoin DE, Rheinberger MM, Sniezek JE.
Surveillance of traumatic brain injuries in Utah. Western J Med 1996;164:192-6.

21. Centers for Disease Control and Prevention, National Center for Injury Prevention and
Control. Unpublished analysis of data from Multiple Cause of Death Public Use Data, 1997.

22. Guerrero JL, Leadbetter S, Thurman DJ, Whiteneck G, Sniezek JE. A method for estimating
the prevalence of disability from traumatic brain injury. (Submitted for publication, 1999)

23. Association for the Advancement of Automotive Medicine. The Abbreviated Injury Scale,
1990 Revision. Des Plains (IL): Association for the Advancement of Automotive Medicine,
1990.

24. Center for Injury Research and Policy of the Johns Hopkins University School of Public
Health. ICDMAP-90 Software. Baltimore, MD: The Johns Hopkins University and Tri-
Analytics, Inc., 1997.

25. Brooks CA, Gabella B, Hoffman R, Sosin D, Whiteneck G. Traumatic brain injury:
designing and implementing a population-based follow-up system. Arch Phys Med Rehabil
1997; 78(8):S26-S30.

27. Whiteneck G. Personal communication, 1998.

26. Research Foundation, State University of New York. Guide for use of the uniform data set
for medical rehabilitation including the functional independence measure (FIM) and functional
assessment measure (FAM), version 4.0. Buffalo, NY: State University of New York, 1995.

TBI in the United States: A Report to Congress Page 20


Executive Summary

Public Law 104-166, the Traumatic Brain Injury Act of 1996, authorizes State surveillance
systems to obtain information on the number of people affected by traumatic brain injury (TBI),
the causes of these injuries, and their severity. As required by this Act, the following Federal
report summarizes current knowledge about the incidence, causes, severity, associated
disabilities, and prevalence of TBI.

Incidence and Prevalence of Traumatic Brain Injury in the United States

Traumatic brain injury (TBI) is a leading cause of death and disability among children and young
adults in the United States. Each year an estimated 1.5 million Americans sustain a TBI. Asa
consequence of these injuries:

. 230,000 people are hospitalized and survive.
. 50,000 people die.
° 80,000 to 90,000 people experience the onset of long-term disability.

As the cumulative result of past traumatic brain injuries, an estimated 5.3 million men, women,
and children are living with a permanent TBI-related disability in the United States today.

While the risk of having a TBI is substantial among all age groups, this risk is highest among
adolescents, young adults, and persons older than 75 years. The risk of TBI among males is
twice the risk among females. The major causes of TBI are:

. Motor vehicle crashes—the leading cause of TBI resulting in hospitalization.

. Violence, especially suicidal behavior and assaults that involve firearms—the leading
cause of TBI-related death.

. Falls—the leading cause of TBI among the elderly.

These injuries have both short-term and long-term effects on individuals, their families, and
society and their financial cost is enormous. According to one study, the annual economic
burden in the United States was approximately $37.8 billion in 1985.

For the estimated 5.3 million Americans who live with a TBI-related disability, the financial cost
is only part of the burden. The long-term impairments and disabilities associated with TBI are
grave and the full human cost is incalculable. Yet because these disabilities are not readily
apparent to the public—unlike a broken leg, for example—TBI is referred to as the invisible
epidemic. These disabilities, arising from cognitive, emotional, sensory, and motor impairments,
often permanently alter a person’s vocational aspirations and have profound effects on social and

TBI in the United States: A Report to Congress Page?


* Violence is a leading cause of TBI—especially among males—and violence with firearms is
the leading cause of TBI-associated death. Effective programs designed to decrease the
occurrence of interpersonal and self-directed violence would help address this cause.

+ Falls are the third leading cause of TBI-associated death. Among women over 75 years of
age and men over 85 years of age, falls are the leading cause of TBI-associated death. Falls
are also a major cause of nonfatal TBI. Risk factors for falls among older persons may
include the use of sedative, antidepressant, or other psychotropic medications; and
impairments of balance or lower extremity function. Although better data are needed to
define the circumstances of fall injuries among older persons, effective interventions may
involve modifying the environment to reduce fall hazards and the impacts of falls and, where
possible, reducing the use of medications with side effects that increase the risk of falling.

Acute Care and Rehabilitation

An effective public health response to TBI also requires concerted programs to minimize adverse
outcomes among persons who do experience injury. We need research activities to improve the
acute care and rehabilitation of persons with TBI, strategies to ensure they have access to
appropriate care and services, and interventions to promote their independence and integration
into the community for persons living with the effects of TBI.

Research to date indicates that the disabilities most often associated with TBI include cognitive,
emotional, and—to a lesser extent—sensory and motor impairments. A traumatic brain injury
may permanently alter a person’s career or vocational aspirations and may also have profound
effects on social and family relationships. In part, impairment of cognitive function may result in
the loss of communication skills and memory, inability to organize tasks and solve problems, and
decreased attention to detail. TBI may also cause emotional instability—especially
impulsiveness—and changes in the ability to see, smell, and hear.

To help persons living with the effects of TBI, we need better information on the nature and
scope of these disabilities, including who experiences TBIs, which rehabilitation treatment
methods are most effective, and what services are useful and readily available.

In the near future, three important developments may increase our knowledge and promote the
development of secondary and tertiary prevention programs.

* The National Center on Medical Rehabilitation Research of the National Institutes of Health
convened the “Consensus Development Conference on Rehabilitation of Persons with
Traumatic Brain Injury” in October 1998. During the conference, experts addressed the
epidemiology, consequences, mechanisms of recovery, therapies for cognitive and behavioral
impairments, and rehabilitation models for TBI.

¢ With CDC support, the Colorado Department of Public Health and Environment, Craig

TBI in the United States: A Report to Congress Page 17



Surveillance Methods Used by States

State health departments in Arizona, Colorado, Minnesota, Missouri, Oklahoma, New York, and
South Carolina reviewed hospital discharge data collected from January 1 to December 31, 1994,
using CDC guidelines to identify cases of TBI. The review identified all cases of TBI among
patients in acute care hospitals who had been discharged with primary or secondary diagnoses
consistent with the CDC case definition (i.e., ICD-9-CM code ranges 800.0-801.9, 803.0-804.9,
and 850.0-854.1). In addition, the review identified TBI-related deaths and collected
information from all death certificates or medical examiner reports that listed TBI or head injury
among the conditions associated with death. Records were linked to eliminate duplicate cases
reported from more than one source. Surveillance in New York excluded residents of New York
City. Surveillance was statewide in all other States. In most States, supplementary information
on severity and external cause of injury was obtained from abstracts of medical records or health-
care provider report forms for all cases (Missouri and Oklahoma) or from representative samples
of cases (Arizona [31 percent sample], Colorado [47 percent sample], and South Carolina [45
percent sample]). The TBI incidence rate for all seven States combined was calculated by using
the sum of the number of cases for each State and the sum of the population of each State
estimated at the midpoint of 1994 (35.3 million total).

TBI in the United States: A Report to Congress Page 23


References

1. Sosin DM, Sniezek JE, Thurman DJ. Incidence of mild and moderate brain injury in the
United States, 1991. Brain Injury 1996;10:47-54.

2. Centers for Disease Control and Prevention, National Center for Injury Prevention and
Control. Unpublished analysis of data from the 1994 National Hospital Discharge Survey, 1998.

3. Sosin DM, Sniezek JE, Waxweiler RJ. Trends in death associated with traumatic brain injury,
1979 through 1992. JAMA 1995;273:1778-80.

4. Centers for Disease Control and Prevention. Traumatic brain injury, Colorado, Missouri,
Oklahoma, and Utah—1990-1993. MMWR, 1997;46:8-11.

5. Max W, MacKenzie EJ, Rice DP. Head injuries: costs and consequences. J Head trauma
Rehabil 1991;6:76-91

6. Kraus JF. Epidemiology of head injury. In: Cooper PR, editor. Head Injury, 3rd ed.
Baltimore: Williams and Wilkins, 1993;1-25.

7. Annegers JF, Grabow HD, Kurland LT, et al. The incidence, causes and secular trends in
head injury in Olmsted County, Minnesota, 1935-1974. Neurology 1980;30:912-9.

8. Klauber MR, Barrett-Connor E, Marshall LF, Bowers SA. The epidemiology of head injury:
a prospective study of an entire community — San Diego County, California, 1978. Am J
Epidemiol 1981;113:500-9.

9. Cooper KD, Tabaddor K, Hauser WA, et al. The epidemiology of head injury in the Bronx.
Neuroepidemiology 1983;2:70-88.

10. Jagger J, Levine JI, Jane JA, Rimel RW. Epidemiologic features of head injury ina
predominantly rural population. J Trauma 1984;24:40-4.

11. Kraus JF, Black MA, Hessol N, et al. The incidence of acute brain injury and serious
impairment in a defined population. Am J Epidemiol 1984;119:186-201.

12. Whitman S, Coonley-Hoganson R, Desai BT. Comparative head trauma experience in two
socioeconomically different Chicago-area communities: a population study. Am J Epidemiol
1984;4:560-80.

13. Fife D, Faich G, Hollinshead W, Wentworth B. Incidence and outcome of hospital-treated
head injury in Rhode Island. Am J Public Health 1986;76:773-8.

14. Fife D. Head injury with and without hospital admission: comparisons of incidence and
short-term disability. Am J Public Health 1987;77:810-12.

TBI in the United States: A Report to Congress Page 19


Figure 11. Traumatic brain injury rates by cause of injury and survival

status - Arizona, Colorado, Minnesota, Missouri, New York,

Oklahoma, and South Carolina, 1994
People injured in
motor vehicle
crashes, falls, or
assaults without a
firearm have a
much greater
chance of surviving
than do those
injured ina
shooting.

Fatal [Non-fatal

Rates per 100,000
8

Transport Falls Firearms = Assault’ © Other/
Unknown

The consistency of findings in these seven States, located in different regions of the United
States, suggests that these data may be broadly representative of the Nation as a whole. The
epidemiologic patterns of TBI described in this report also resemble those from an analysis of
1994 National Hospital Discharge Survey (NHDS) data, which obtained hospital discharge data
from a sample of 478 participating hospitals located across the United States. The crude TBI-
related hospitalization rate estimated in the NHDS was 94 per 100,000 population.” The
combined TBI-related hospitalization rate obtained from Arizona, Colorado, Minnesota,
Missouri, New York State, Oklahoma, and South Carolina is approximately 20 percent lower
than the corresponding rate estimated from the NHDS. Different sampling and other methods
that may explain this rate difference have not yet been elucidated.

The rates in this report are substantially lower than rates previously reported in studies conducted
from 1974 to 1986 (approximately 200 cases per 100,000 population annually).”!° In
comparison, from 1979 to 1992, the TBI-associated death rate declined 22 percent, largely
because of a decrease in TBI-related deaths associated with motor-vehicle crashes.? The findings
in this report and those from the NHDS suggest a decline of approximately 50 percent in
combined morbidity and death during a corresponding interval, indicating a disproportionately
large reduction in rates of nonfatal TBI resulting in hospitalization. This decrease may reflect
successes in injury prevention efforts but may also be the result of recent changes in hospital
admission policies that encourage outpatient care for less severe injuries.

This evident shift away from inpatient care underscores the need for surveillance of TBI patients
treated in emergency departments and other outpatient settings. The National Center for Health
Statistics National Health Interview Survey (NHIS) has provided some information on the

TBI in the United States: A Report to Congress Page 14


In 1995, CDC published Guidelines for Surveillance of Central Nervous System Injury" to help
ensure that the multistate TBI surveillance system would generate valid and timely information
representative of the U.S. population. These guidelines provide a standard case definition
(Appendix I) of traumatic brain injury (craniocerebral trauma) that can be summarized as an
occurrence of injury to the head (arising from blunt or penetrating trauma or from acceleration-
deceleration forces) that is associated with symptoms or signs attributable to the injury—
decreased level of consciousness, amnesia, other neurologic or neuropsychologic abnormalities,
skull fracture, diagnosed intracranial lesions—or death. The Guidelines also clearly define the
data elements necessary to describe the occurrence and severity of these injuries, their external
causes, and associated risk factors. The core of these data elements can be obtained from
hospital discharge reports, which are readily available to most State health departments.

The most recent developments in CDC’s TBI surveillance program include the following:

* Jn 1995, CDC funded an extensive follow-up study to describe TBI-related disability in
Colorado and to develop methods for ongoing studies of longer-term outcomes of TBI in
State populations.

« In 1997, CDC published initial findings from the multistate TBI surveillance system,
including data from four States: Colorado, Missouri, Oklahoma, and Utah.* Two of these
States (Colorado and Utah) recently published their separate findings.”°”!

In September 1997, with the help of funding provided under Public Law 104-166, CDC added 11
States to the system, bringing the total number of participants to 15. Participating States now
include Alaska, Arizona, Arkansas, California, Colorado, Louisiana, Maryland, Minnesota,
Missouri, Nebraska, New York, Oklahoma, Rhode Island, South Carolina, and Utah. Together,
these States are quite representative of the diversity of populations found throughout the United
States.

TBI in the United States: A Report to Congress Page 6


« Identify the types and frequency of disabilities associated with TBI.

* Assess the need for public health services (e.g., treatment for alcohol abuse or depression)
and social services (e.g., job training or marital counseling) for persons with TBI.

¢ Explain the relationship between the initial severity of the injury and its long-term outcome,
to better identify persons needing ongoing medical, rehabilitation, and other services.

To implement more effective programs to prevent these injuries, we must have reliable data on
their causes and risk factors. State surveillance systems can provide such data, identify trends in
TBI incidence, enable the development of cause-specific prevention strategies focused on
populations at greatest risk, and monitor the effectiveness of such programs.

TBI in the United States: A Report to Congress Page 3


family relationships.

The human face of TBI is suggested by this example, which describes experiences shared by
many others:

In 1988, Dr. J.M.Z.—a 44 year-old marriage and family counselor—was struck by a powerboat
while kayaking and knocked unconscious for a short time. In the hospital emergency
department he was briefly examined, told that he had suffered a "concussion," and sent home an
hour later without other treatment. Despite symptoms including headache, fatigue, and memory
loss, he returned to his counseling practice. His clients noticed his memory and concentration
problems and he had to close his practice in six months.

His health insurance company raised his premium rates until he could no longer afford coverage.
His wife divorced him. His applications for Social Security disability income were denied over
two years, and for six months he had to live in a van. Finally, he received some Social Security
benefits. Years later, he learned about and enrolled in a new college program designed for
people with brain injury. He developed ways of partially compensating for his continuing
memory and concentration difficulties and re-opened a part-time counseling practice that
provides minimal income. Appropriate follow-up from a State TBI registry might have led him
to helpful programs earlier.

Measuring Trends in TBI

Rates of TBI-related death have declined 20 percent since 1980, reflecting some success in
efforts to prevent such injuries. The decline in TBI-related hospitalization rates has been much
greater—about 50 percent since 1980—during a period when efforts to contain health care costs
may have led to changes in hospital admissions practices restricting inpatient care. This much
larger decline in hospitalization rates suggests that an increasing proportion of persons with less
severe TBI may now receive only emergency department outpatient care and are sent home
instead of being admitted to hospitals.

If we are to measure the fotal impact of TBI, the needs for TBI services, and the true injury
reductions due to successful prevention, we must include emergency department-based
surveillance with surveillance based on hospitalization admissions. Knowing more about the
outcomes of TBIs—those treated only in emergency departments as well as those treated in
hospitals—is critical in order to assure proper treatment and follow-up.

State follow-up registries, built on surveillance systems, provide more information to help States
and communities design, implement, and evaluate targeted, cost-effective programs for people
living with TBI and their families, including programs that provide vocational rehabilitation and
school and community support. These registries can gather the information needed to:

TBI in the United States: A Report to Congress Page 2


incidence of TBI treated on an outpatient basis.' In 1991, an estimated 1.54 million non-
institutionalized U.S. civilians sustained a brain injury that resulted in loss of consciousness but
was not severe enough to cause death or long-term institutionalization, according to self-reported
NHIS data collected with the 1991 Injury Supplement. Of these 1.54 million persons, 25 percent
received no medical care for their TBI, 49 percent received care in an emergency department or
other outpatient site, 9 percent received overnight hospital care, and 16 percent were admitted to
a hospital for two or more days.

CDC Estimates of Traumatic Brain Injury-Related Disability
Prevalence

The CDC’s National Center for Injury Prevention and Control estimates that 5.3 million U.S.
citizens (2 percent of the population) are living with disability as a result of a traumatic brain
injury. This represents the prevalence of TBI disability, defined as the proportion of persons in
the population at a given time who have disability resulting from a traumatic brain injury. To
estimate the prevalence of disability from TBI in the United States, CDC developed a model
incorporating data on the incidence of TBI, severity of injury, and likelihood of disability given a
specific level of injury severity.” Data come from several sources:

© CDC estimated the incidence of TBI by using its case definition and 1970-1995 National
Hospital Discharge Survey (NHDS) data, obtained from CDC’s National Center for Health
Statistics.'

* CDC estimated the severity of TBI by using NHDS data, classified according to ICD-9-CM-
derived Abbreviated Injury Scale” (ICD/AIS) scores by means of a computer algorithm
(ICDMAP-900).”*

* Calculating the likelihood of disability following TBI at each level of severity required two
data sources. For injuries occurring in 1980 or after, CDC obtained preliminary follow-up
data from the Colorado TBI Registry and Follow-up System,”*”’ which surveyed TBI
survivors one year after injury and measured disability by using the Functional Independence
Measure.”° For injuries that occurred before 1980, we used historical data reviewed by
Kraus.””

The model uses these data to estimate the number of persons alive in 1996 who had ever had a
TBI that required hospitalization and resulted in long-term disability. It incorporates differences
in rates across age groups, variations in injury severity, and changing patterns in hospital
admissions related to severity. The model does not account for disability among people who
visited emergency departments or outpatient clinics with a TBI but were not admitted to the
hospital. Because of this, our estimate of 5.3 million U.S. citizens living with TBlI-related
disability may be low. Other restrictions in existing data and methods may also affect the

TBI in the United States: A Report to Congress Page 15


nonprofit entities for planning, developing, and operating projects to reduce the incidence of
traumatic brain injury.

* Present a report to Congress that describes the incidence and prevalence of traumatic brain
injury.

Funding for all these activities was authorized at $3 million for each of the fiscal years 1997,
1998, and 1999.

CDC’s Traumatic Brain Injury Surveillance Program, 1989-1998

Ongoing, population-based surveillance systems—and registries to define disability and other
outcomes associated with TBI—are essential for planning and evaluating prevention, acute care,
and rehabilitation services for people with these injuries. Yet such systems have only recently
been established. Before 1990, most TBI data came from either hospital-based clinical case
series or epidemiologic studies that were of limited duration and restricted to particular locales.
Despite the limitations of these data sources, they revealed some useful insights into the
epidemiology of TBI.

During the 1970s and early 1980s, researchers estimated that each year, about 500,000
Americans sustained a brain injury leading to hospitalization or death.° The reported annual
incidence of TBI in different localities ranged from 132 to 367 injuries per 100,000
population,’ with the best estimate of national incidence at about 200 per 100,000 population."
Different case definitions for TBI and varied methods of collecting data made it difficult to
compare information from these studies, combine data across studies, and thus estimate the
national incidence of TBI.'” In the case definition, for example, not all studies included skull
fractures without other neurologic symptoms, and some excluded immediate deaths that did not
involve hospitalization. Most studies focused on limited geographic areas that were not
necessarily representative of the United States as a whole. From these studies it was not possible
to evaluate U.S. trends in the occurrence of TBI-related hospitalizations.

CDC began promoting the development of a multistate traumatic brain injury surveillance system
in 1989 with funding support and technical assistance, after the Federal Interagency Head Injury
Task Force Report identified the need for better information on the public health impact of brain
injuries.'* The surveillance system’s function is to characterize the risk factors, incidence,
external causes, severity, and outcomes of traumatic brain injury in the population. Such
improved data collection can help achieve two important public health goals:

¢ Primary prevention. Effective programs should be targeted to address specific causes of TBI
and populations at higher risk.

¢ Acute care and rehabilitation. Accurate data are needed to improved injured persons’ access
to health care and other necessary services.

TBI in the United States: A Report to Congress Page 5


Appendix: Methods Used to Produce Estimates for This Report

CDC Case Definition for Traumatic Brain Injury

CDC issued the following case definition for traumatic brain injury in its 1995
publication, Guidelines for Surveillance of Central Nervous System Injury.'

For the purposes of public health surveillance, jurisdictions may elect to ascertain cases of
traumatic brain injury from clinical records or from existing uniform data systems. Case
definitions are presented for both types of ascertainment.

Clinical Case Definition. For surveillance systems using data from clinical records, a case of
traumatic brain injury (craniocerebral trauma) is defined either:

* as an occurrence of injury to the head that is documented in a medical record, with one or
more of the following conditions attributed to head injury:”
— observed or self-reported decreased level of consciousness,*
— amnesia,*
— skull fracture,
— objective neurological or neuropsychological abnormality,§ or
— diagnosed intracranial lesion;'!

© oras an occurrence of death resulting from trauma, with head injury listed on the death
certificate, autopsy report, or medical examiner’s report in the sequence of conditions that
resulted in death.

“Injuries to the head may arise from blunt or penetrating trauma or from acceleration-deceleration
forces.

*Decreased level of consciousness refers to partial or complete loss of consciousness. This includes
states described as obtundation, stupor, or coma.

+Amnesia may include loss of memory for events immediately preceding the injury (retrograde
amnesia), for the injury event itself, and for events subsequent to the injury (posttraumatic amnesia).

§Neurological abnormalities are determined from neurological examination. Examples include
abnormalities of motor function, sensory function, or reflexes; abnormalities of speech (aphasia or
dysphasia); or seizures acutely following head trauma. Neuropsychological abnormalities are
determined from mental status and neuropsychological examinations. Examples include disorders of
mental status (such as disorientation, agitation, or confusion) and other changes in cognition, behavior, or
personality.

'Examples of diagnosed intracranial lesions include traumatic intracranial hematomas or hemorrhage
(epidural, subdural, subarachnoid, or intracerebral), cerebral contusions or lacerations, or penetrating
cerebral injuries (e.g., gunshot wounds). The diagnosis of such intracranial lesions is usually confirmed
with a computed tomography (CT) or magnetic resonance imaging (MRI) brain scan or by other
neurodiagnostic procedures.

TBI in the United States: A Report to Congress Page 21


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Figure 2. Traumatic brain injury-related death rates
by age and gender, United States, 1994

1405 Male
1204

1004

604

Rate per 100,000

40+ Female

204

I
0-4 5.9 10-14 15-19 20-24 25-29 30-34 35.39 40-44 45-49 50-54 55-59 60.64 65-69 70-74 75-79 80-84 85+

Age group

Teens, young
adults, and people
over 75—especially
males—are far
more likely than
others to die of
traumatic brain

injury.

Leading causes of TBI-associated death among males varied with age in 1994 (Figure 3).
Firearm-related injuries were the leading cause of TBI-associated death among males aged 15-84
years, transportation-related injuries among those under 15 years of age, and falls among those 85

years of age and older.

Figure 3. Traumatic brain injury-related death rates
by age and cause, U.S. males, 1994*

1407 Overall
1207
g 1005
s
S 80
3
2 60
s Falls
of
& 404 Firearms
Other
204 .
‘Transportation
oH = —r
OM $9 1014 1819 2024 2829 40-4 3939 40-44 4549 5054 58-59 6064 6569 70°74 7509 BD-RE BSH
‘Age group

*Note different scale for Y axis for females

Brain injuries that
kill boys and young
men are often the
result of shootings
or motor vehicle
crashes.

TBI in the United States: A Report to Congress

Page &


Current Data on Traumatic Brain Injury Mortality and Morbidity
Deaths Nationwide, 1980-1994

Current information on TBI deaths comes from the National Center for Health Statistics for the
years 1980-1994.”! In 1994, 51,350 persons died from traumatic brain injury; most of these
deaths were related to firearms, transportation (injuries involving motor vehicle occupants,
pedestrians, bicyclists, motorcyclists, and others), or falls.

From 1980 through 1994, the TBI-associated death rate in the United States decreased 20
percent, from 24.7 per 100,000 population to 19.8 per 100,000 population (Figure 1). Most of
the decrease resulted from a 38 percent decline in transportation-related deaths, from 11.1 per
100,000 population in 1980 to 6.9 per 100,000 in 1994. Rates of TBI-associated death due to
falls and other causes also decreased during this period. However, firearm-related TBI deaths
increased 11 percent during this period, from 7.6 per 100,000 in 1980 to 8.4 per 100,000 in 1994.
Because of this increase, firearms-use surpassed transportation crashes as the leading cause of
death from TBI in 1990.

Figure 1. Traumatic brain injury-related death rates
by cause, United States, 1980-1994*

304
*1 oN
3 20 Overall .
s Firearms use has
5 154 been the leading
2 44 cause of death from
oe ~ Firearms traumatic brain
—-——-- Transport | :
5 injury since 1990.
Other
0 Falls

80 81 82 83 84 85 86 87 88 89 90 91 92 93 94
Year

* Age-adjusted to 1990 U.S. population

In 1994, death rates among males were 3.3 times higher than among females (30.7 per 100,000
males compared with 9.3 per 100,000 females) (Figure 2). Rates were highest among persons
aged 75 years and older (46.3 per 100,000), with a smaller peak among those aged 15—24 years
(32.8 per 100,000).

TBI in the United States: A Report to Congress Page7


Introduction
Public Health Significance of Traumatic Brain Injury

Traumatic brain injury is a leading cause of death and lifelong disability among children and
young adults in the United States. The Centers for Disease Control and Prevention (CDC) has
estimated that each year, approximately 1.5 million Americans survive a traumatic brain injury,’
among whom approximately 230,000 are hospitalized.” Approximately 50,000 Americans die
each year following traumatic brain injury, representing one third of all injury-related deaths.
Adolescents, young adults, and the elderly are at highest risk of these i injuries; the most common
causes are attributed to motor vehicle crashes, falls, and violence.‘

One study estimated that the annual economic burden of TBI in the United States was
approximately $37.8 billion in 1985.° This estimate included $4.5 billion in direct expenditures
for hospital care, extended care, and other medical care and services; $20.6 billion in injury-
related work loss and disability; and $12.7 billion in lost income from premature death. This
study could not account for the intangible costs borne by the families and friends of individuals
who die prematurely from brain injury. For injured persons and their loved ones, the physical
and emotional tolls from permanent disability are profound and impossible to quantify.

Thus, traumatic brain injuries have a deep impact on the population and require a response from
the public health community to prevent these injuries and reduce consequent disabilities. To
achieve this goal, the Division of Acute Care, Rehabilitation Research, and Disability Prevention
in CDC’s National Center for Injury Prevention and Control (NCIPC) has been working since
1989 to develop a traumatic brain injury surveillance system that provides representative data
regarding the incidence, risk factors, and causes of traumatic brain injury in the United States and
allows comparisons across jurisdictions. The system supports the development, implementation,
and evaluation of programs for preventing traumatic brain injury. This effort is enabled, in part,
by funding under Public Law 104-166, the Traumatic Brain Injury Act of 1996.

What the Traumatic Brain Injury Act of 1996 Mandates

Public Law 104-166 charges CDC with implementing projects to reduce the incidence of
traumatic brain injury. Specifically, the legislation mandates that CDC shall:

* Develop a uniform reporting system for traumatic brain injuries.

* Conduct research into the identification of effective strategies for preventing traumatic brain
injury.

¢ Implement public information and education programs for preventing TBI and for broadening
public awareness about the public health consequences of TBI.

¢ Provide technical assistance, either directly or through grants and contracts, to public or

TBI in the United States: A Report to Congress Page 4


Hospital, and the South Carolina Department of Disabilities and Special Needs are
developing population-based registries of persons with TBI. Designed as models for other
States, these registries will better define the proportion of persons in entire States with
various outcomes associated with TBI, the services to which persons with TBI have been
referred, and the services that have actually been delivered.

« Twenty-one States are promoting services for people with TBI via demonstration grants from
the Health Resources and Services Administration, funded in 1997 under Public Law 104-
166.

Improved Data Systems

Finally, more effective, targeted prevention requires better information on the occurrence of TBI
and the circumstances surrounding those injuries (for example, the involvement of alcohol and
other drugs or the use of personal protective equipment such as helmets). Expanded use of
registries facilitates such data collection while also producing more precise information on the
impact of these injuries. Standard measures for TBI outcomes need to be refined so that they will
readily identify those adverse outcomes most amenable to prevention through rehabilitation and
social support. A person’s long-term outcome is related to the severity of the TBI. Better
defining the relationship between the initial severity of an injury and a person’s long-term
outcome would help identify those persons who need ongoing medical care, rehabilitation, and
other services. Such information also would also help health practitioners and policy makers
ensure that these services are available in the community.

TBI in the United States: A Report to Congress Page 18



Appendix References

1. Thurman DJ, Sniezek JE, Johnson D, et al. Guidelines for Surveillance of Central Nervous
System Injury. Atlanta: Centers for Disease Control and Prevention, 1995.

2. International Classification of Diseases, 9th Revision (ICD-9). Geneva, Switzerland: World
Health Organization, 1977.

3. International Classification of Diseases, 9th Revision, Clinical Modification, 3rd ed. (ICD-9-
CM). Washington DC: U.S. Department of Health and Human Services, 1989.

4. Sosin DM, Nelson DE, Sacks JJ. Head injury deaths: the enormity of firearms. JAMA
1992;268:791.

TBI in the United States: A Report to Congress Page 24


Contents

Executive Summary ........0.0 000. c cece etn ene tee teen eee 1

Introduction ©2000... 0... c cee eee een nee nnn eee n eee 4

Public Health Significance of Traumatic Brain Injury .... 2.6.6.6... eee e eee eee eens 4
What the Traumatic Brain Injury Act of 1996 Mandates ........-. 0... e sees eee e eens 4
CDC’s Traumatic Brain Injury Surveillance Program, 1989-1998 ............-....55- 5
Current Data on Traumatic Brain Injury Mortality and Morbidity ..................- 7
Deaths Nationwide, 1980-1994 .............66- 27
Fatal and Nonfatal Injuries in Seven States, 1994 ...... 0... eee eee eee eee eee eee 10
CDC Estimates of Traumatic Brain Injury-Related Disability . . .15
Prevalence ..... 0.00. e eee eee eee teen een nee 15
Incidence 2.0... 6... cece een nent n ener ete e eee 16
Public Health Goals ......... 00... c cece eee ene een nee e nee 16
Primary Prevention ........ 0... cece e eee eee eee nnn een teen eee nnn ees 16
Acute Care and Rehabilitation ..... 0... 60. c cece cece eee e nee n eens 17
Improved Data Systems ..... 2.2.0.5 eect n ene eens 18
References 0.2.0.2... enn net n ene e nee n eens 18
Appendix: Methods Used to Produce Estimates for This Report ..............-.--++- 21
CDC Case Definition for Traumatic Brain Injury ......... 6... c cece eee eee eee eee 21

Surveillance Methods Used by States
Appendix References ..........6 00000 e cence eens



Figure 6. Traumatic brain injury rates by state - Arizona, Colorado,
Minnesota, Missouri, New York, Oklahoma, and
South Carolina, 1994
1204 BAI TBI

O Fatal TBI

1004 Serious nonfatal
traumatic brain
injuries requiring
hospitalization
greatly outnumber

— fatal traumatic
| | | brain injuries in
0 1 nn seven States.

AZ MO CO OK sc MN NY**

%
S$

Rates per 100,000 *
& 8

y
$

* Age-adjusted to 1990 U.S. Population
**NY data exclude New York City residents

Figure 7. Traumatic brain injury rates by age group - Arizona,
Colorado, Minnesota, Missouri, New York, Oklahoma,
and South Carolina, 1994

Teenagers, young

200) adults, and people
180) over 75 are far
160) more likely than
gS 140 .
3 others to sustain a
S 1204 . .
2 traumatic brain
= 1004 wo . .
Bo injury, primarily
3 804
S cod because of motor
404 vehicle crashes and
20-4 violence among
0 : : ae Ue) oe youths, and falls
0-4 5-14 15-24 25-34 35-44 45-54 55-64 65-74 75-Up

Age Group among the elderly.

Transportation-related crashes (involving motor vehicles, bicycles, pedestrians, and recreational
vehicles) accounted for 49 percent of all TBIs; falls accounted for an additional 26 percent
(Figure 8). Firearm-use accounted for 10 percent of all TBIs in the seven States, and assaults not

TBI in the United States: A Report to Congress Page 11


The leading causes of TBI varied by age in the seven States. Falls were by far the leading cause
of TBI among persons aged 75 years and older (at a rate of 126.6 per 100,000), whereas
transportation led the list for persons aged 15-24 years (97.9 per 100,000) (Figure 10). Analysis
also revealed that the severity of injury and the outcome varied depending on the cause. For
example, 90.4 percent of firearm-related TBIs resulted in death, but only 10.2 percent of fall-

related TBI proved fatal (Figure 11).

Figure 10. Traumatic brain injury rates by age group and cause
of injury - Arizona, Colorado, Minnesota, Missouri,
New York, Oklahoma, and South Carolina, 1994

140)
Falls
1204
g 100
S
S 80
s
2 604
£
Z 40 Transport
20 ee __- Firearms
= = Other
0 im 7 Assault
0-4 5-14. 15-24 25-34 35-44 45-54 55-64 65-74 75-up

Age Group

Peak incidence
rates in youths are
largely related to
motor vehicle
crashes, whereas
peak rates in the
elderly are largely
related to falls.

TBI in the United States: A Report to Congress

Page 13


Authors and Contributors

National Center for Injury Prevention and Control

David J. Thurman
Clinton Alverson
Doug Browne
Kathleen A. Dunn
Janet Guerrero
Renee Johnson
Valerie Johnson
Jean Langlois
Diane Pilkey
Joseph E. Sniezek
Susan Toal, Contractor

State Brain Injury Surveillance Programs

Pam Gosler, Arizona Department of Health

Barbara Gabella and Richard Hoffman, Colorado Department of Public Health and Environment
Gail Whiteneck, Craig Hospital, Denver, Colorado

Mark Kinde and Jon Roesler, Minnesota Department of Health

Garland Land and Mark van Tuinen, Missouri Department of Health

Loretta Santilli, Kathleen Thoburn, and Gerald Feck, New York State Department of Health

Pam Archer, Michael Crutcher, and Sue Mallonee, Oklahoma State Department of Health
Emest McCutcheon and Anbesaw Selassie, University of South Carolina School of Medicine
Leroy Frazier, South Carolina Department of Health


The clinical definition of traumatic brain injury excludes the following:

¢ lacerations or contusions of the face, eye, ear, or scalp, without other criteria listed above
¢ fractures of facial bones, without other criteria listed above

¢ birth trauma

¢ primary anoxic, inflammatory, infectious, toxic, or metabolic encephalopathies which are
not complications of head trauma

* neoplasms

* brain infarction (ischemic stroke) and intracranial hemorrhage (hemorrhagic stroke)
without associated trauma

Data Systems Case Definition. For surveillance systems receiving case reports from coded
death certificates or hospital discharge data, the following International Classification of
Diseases, Ninth Revision (ICD-9)° or International Classification of Diseases, Ninth Revision,
Clinical Modification (ICD-9-CM)° diagnostic codes" are included in the definition of traumatic
brain injury:

800.0-801.9 Fracture of the vault or base of the skull

803.0-804.9 Other and unqualified and multiple fractures of the skull

850.0-854.1 Intracranial injury, including concussion, contusion, laceration, and
hemorrhage.

Additional cases of traumatic brain injury may be ascertained from death certificates coded as
follows:

873.0-873.9 Other open wound of head.”"*

‘Note: ICD-9 codes are used for coding death certificates. ICD-9-CM codes are used for morbidity

data. The codes are comparable except that ICD-9-CM codes include a fifth digit not found in ICD-9
codes.

“Note: This code range should not be applied to intracranial injuries. However, reviews of multiple
cause mortality data from death certificates indicate that a substantial number of cases of intracranial
injury, especially gunshot wounds, are mistakenly given these codes. Suspected cases of head trauma
which have been so coded may be confirmed by review of medical records or death certificates.

TBI in the United States: A Report to Congress Page 22


Traumatic Brain Injury
in the United States:

A Report to Congress

Prepared by

Division of Acute Care, Rehabilitation Research, and Disability Prevention
National Center for Injury Prevention and Control

Centers for Disease Control and Prevention

U.S. Department of Health and Human Services

December, 1999


For females, the leading causes of TBI-related deaths also varied with age. Transportation-
related injuries were the leading cause of TBI among females from birth to 74 years of age,
although death rates related to firearms and transportation were almost identical among women
aged 30-54 years (Figure 4). As in the older male population, falls were the leading cause of
TBI-associated death among women 75 years of age and older.

Figure 4. Traumatic brain injury-related death rates
by age and cause, U.S. Females, 1994*

455 a ar)
0 Overall Brain injuries that
45 kill women over 85
2 30 are usually the
3 0s result of falls,
00 whereas brain
8 injures that claim
$ 154 .
z the lives of teenage
, girls and young
women most often
OTD toe tee none 25o9 se aaay set 9 se 9 elt Gla 70TH 729 wR occur in motor

Age grou .
199 group vehicle crashes.

“Note different scale for Y axis for males

TBI-associated death rates in 1994 differed by race as well (Figure 5): 25.5 per 100,000 for
African Americans; 19.0 per 100,000 for whites; and 15.3 per 100,000 for all other racial groups
combined. Among African Americans, firearm-use was the leading cause of TBI-associated
death, with a rate of 13.6 per 100,000. This rate was more than two times higher than the rate for
the next leading cause, transportation. Firearm-related injuries were also the leading cause of
TBI-associated death among whites, with a rate of 7.9 deaths per 100,000—just slightly higher
than the transportation-related rate (7.3 per 100,000). Transportation was the leading cause of
TBI-associated death among all other racial groups (6.1 per 100,000).

TBI in the United States: A Report to Congress Page 9



involving firearms accounted for 8 percent of reported injuries. Nearly two-thirds of firearm-
related TBIs (66.5 percent) were classified as suicidal in intent (Figure 9).

Figure 8. Proportions of traumatic brain injury by cause - Arizona,
Colorado, Minnesota, Missouri, New York, Oklahoma, and

South Carolina, 1994

Transportation

Unknown 0.6%

Figure 9. Proportions of firearm-related traumatic brain injury
by intent - Arizona, Colorado, Minnesota, Missouri,
New York, Oklahoma, and South Carolina, 1994

Intentional -
inflicted by self
66.5%

SS

Intentional -
inflicted by other
25.7%

Legal intervention 0.2%

Unintentional 4.3%

Intent unknown 3.3%

Motor vehicle
crashes are by far
the leading cause of
traumatic brain
injury in these
seven States and
nationally as well.
Shootings cause
less than 10 percent
of all traumatic
brain injuries, yet
they are the leading
cause of TBI-
related death.

The majority of
firearm-related
traumatic brain
injury represent
suicides or suicide
attempts, although
more than a fourth
are the result of
assaults by others.

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Page 12