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TBI Research Review: Unidentified Brain Injury

Mount Sinai School of Medicine

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TBI Research Review: Unidentified Brain Injury
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The aim of TBI Research Review is to summarize current research on traumatic brain injury (TBI), offer suggestions for future research planning and suggest application of research findings to clinical practice and policy. The focus in this second issue is on Unidentified TBI

Millions of people have experienced a traumatic brain injury (TBI), but they are unaware that TBI is the underlying cause of problems they subsequently experience, such as poor memory, difficulties in learning and behavioral changes. These individuals had a blow to the head, were dazed and confused, perhaps even lost consciousness, perhaps got medical attention and then went on with their lives. They thought once the headaches or dizziness went away all would be fine, but they didn't notice that all was not right.

Or, they did notice but didn't identify the source of their problems as the brain injury. The result is that they have substantial, persisting cognitive, behavioral and social difficulties - seemingly out of the blue - with no explanation and nowhere to turn. And, as we discuss below, because of the lingering challenges they face, individuals who have sustained brain injuries are at very high risk of social failure. The need to identify people with "hidden TBI" and address their challenges, to prevent social failure, is the subject of this newsletter.

Personal Stories

We illustrate the problem of unidentified TBI with the experiences of two people:

  • Tim experienced a brain injury while diving, after which he sought medical care in an emergency department. There, the doctor explained very little about brain injury, suggesting that "all would be fine". Based on this, Tim expected no continuing symptoms - whether physical or cognitive. So, like millions of others with brain injuries, he did not associate the problems he later experienced with the TBI. Instead, Tim said to himself, "I'm just a guy getting older, forgetting more often." He probably will not seek help, and, if he does, neither he nor his doctor is likely to define the prior brain injury as a possible root cause of Tim's problems. Tim is a person with "hidden TBI", in the sense that he has daily challenges associated with a brain injury but is unaware of their cause.
  • In contrast, because John was hospitalized with a TBI two years ago, he was educated about the probable consequences of brain injury. Because of this awareness, when he visits his psychologist for treatment of clinical depression, she knows to carefully adapt her methods to accommodate John's substantial post-TBI memory problems. For example, she repeats certain exercises several times so that he is able to learn the ideas and apply them in daily life. Also, because of her knowledge of TBI, she realizes that a referral to a job coach may be needed for John to keep his employment and reduce some of his concerns, which are contributing to his mood disorder and diminishing his quality of life. In this simple scenario, we see that John's having an identified TBI has raised the therapist's awareness of John's brain injury, how it affects his functioning and how accommodating her practices to his memory problems; this provides the basis for taking actions that can aid him in achieving his goals.

The Many Reasons for Hidden TBI

How can it be that brain injury can remain hidden to the person? Hidden TBI occurs when the link between an injury to the brain and associated problems is unclear. Like in the case of Tim, who sought medical help, health professionals may fail to provide adequate guidance on the possible consequences of injury. Or, TBI may remain hidden if the blow to the head does not send the person to the hospital but is a repeated part of life, as in people who are physically abused or get into repeated fights. In these cases, the effects of the brain injuries may accumulate gradually and never are viewed as a consequence of recurring trauma. Or, hidden TBI may occur when the period between a blow to the head and the emergence of problems is lengthy - such as in many childhood brain injuries. Or, the injured person may be positively reinforced for not seeing cause-and-effect, for example, professional athletes whose continued livelihood depends on not noticing the effects of repeated concussions. There are many other reasons that TBI may remain hidden. Thus, there are many people like Tim, who, as a result of their unawareness, fail to seek and get the services and help that they need. Without such help, they remain at increased risk for social failure - which we discuss below.

How Big a Problem Is This?

How many people are likely to have a hidden TBI? The numbers are huge. But, the numbers are imprecise, for two reasons. First, with a few exceptions, incidence surveys of TBI only count people hospitalized or seeking care in an emergency department. But hidden TBI is to a large degree not a phenomenon of people who have sought care. Second, most people who experience a "mild" brain injury -- whether they get care or not -- recover fully 1 , so they go on with their lives quite nicely -- and these lucky ones are not part of our concern. So, estimates of "hidden TBI" that places people at risk for social failure must take these two facts into account.

We can begin estimating the numbers of people with hidden TBI in the U.S. by starting with the population of those with known TBI. The 1998 NIH Consensus Statement on TBI 2 estimates this number as 2.5 - 6.5 million people, while the Centers for Disease Control places the number at 5.3 million (2 percent of the U.S. population) 3. These large numbers of people with known (not hidden) TBI need to be multiplied, because research suggests 4,5 that, for every person hospitalized with a brain injury, 3-5 others who are injured do not receive any care at all (these are the children on the playground, the battered women, much of the hidden TBI population). Thus, given the number of those with known TBI and those who go untreated 4,5, the full population of those injured could exceed 30 million people, with the number of those with TBI-related problems that don't "heal themselves" somewhat smaller. In a population-based survey, Silver and colleagues 6 found 7 percent of those surveyed (in a typical U.S. community) reported a brain injury with continuing challenges.

From the Mount Sinai School of Medicine. www.mssm.edu.

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