Traumatic Brain Injury in the United States: A Report to Congress

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.

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. As a consequence of these injuries:

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:

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 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.

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 total 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:

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.