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Social Failure and Unidentified TBI
TBI is strongly associated with multiple, often overwhelming, challenges that can undermine the person's efforts to live a healthy, productive life. Combined, these challenges often result in the person with TBI becoming a "social failure". At the extreme, Lewis and colleagues 7 found that all of the inmates they interviewed on death row had experienced one or more TBIs. Among prisoners in general, estimates of TBI range from 42 percent to 87 percent 8-10 , with most of these brain injuries preceding the start of criminal activity. TBI is also common in inpatient psychiatric populations, and, similarly, the TBI usually precedes onset of psychiatric symptoms 11-12. TBI is associated with high levels of depression and anxiety 13 and those with TBI attempt suicide four times more often than those with no brain injury 6. Additionally, those who are severe substance abusers often have a history of early TBI 14,15. Simpson and Tate 16 found suicide 21 times more likely in those with combined TBI, substance abuse and major depression. Finally, children with TBI are at increased risk for social failure as they mature into adulthood. TBI in children is associated with poor academic performance 17 as well as problem behaviors 18. Glang and colleagues 19 estimate that 130,000 U.S. children need special education classes because of TBI, but that, in fact, only 11 percent are currently enrolled. These children truly remain "hidden" to their schools.
Implications: Step One
Large numbers. Large problems. Why haven't we done better in finding children with TBI and educating them appropriately or in identifying and assisting adults with TBI before they become residents of psychiatric and penal institutions? A primary explanation is that our understanding of both the risk for social failure that TBI may trigger and the estimated size of the population of people with hidden TBI is relatively recent 6,20. Now that we recognize that a sizable, life-wrenching problem exists, we need to begin screening to find people with hidden TBI. Once identified we can bring to bear appropriate interventions to assist them in avoiding the major risks described above and in achieving the kinds of goals that often are out of reach because of TBI's cognitive, emotional and behavioral consequences.
How does one screen for TBI? We developed the Brain Injury Screening Questionnaire (BISQ) to address this need, the only such instrument of which we are aware 21. The BISQ is structured to first review the kinds of situations in which a brain injury can occur, with the idea that memory of perhaps long-ago events is aided by reviewing specific examples (e.g., "on the playground", "falling down stairs") 22. If a blow to the head has been experienced, respondents are asked to recall whether they experienced being dazed and confused or a loss of consciousness. If the answer is yes, they self-report on 100 symptoms commonly found after TBI, which were adapted from existing lists 23-24.
For those individuals with no blows to the head associated with changed mental status, the BISQ takes about 5 minutes to complete. For those who have been injured, administration time is longer, allowing for review of the 100 symptoms. This final step is critical, as most people who experience brain injuries appear to fully heal, having no negative consequences in their daily lives. However, about 15 percent of people, even those with relatively mild injuries, experience persisting, highly disruptive symptoms that do not "go away" 1. Thus, identifying the functional changes that this 15 percent continues to experience following the blow to the head is critical in making a determination of whether the person screens positive or negative.
To screen positive, current difficulties in functioning reported must be numerous and similar to those of people with a known brain injury. Our research suggests that when individuals who are being screened complain of the same symptoms experienced by individuals with a known TBI, they are likely to have a hidden TBI and that the likelihood of TBI is higher when many complaints fall into the cognitive category 25. If this type of pattern occurs, a recommended next step is to refer the person for neuropsychological testing to confirm the outcome. In the absence of such testing, the report that summarizes BISQ data nevertheless provides a wealth of information to help direct actions and accommodations to assist the person with a possible or probable brain injury.
The BISQ has been used in screening people who do not identify themselves as having a disability. In one study, we found that 7 percent of a group of "non-disabled" college students screened positive for brain injury: they had experienced a blow to the head, loss of consciousness and large numbers of continuing TBI-related problems. In a second study, the BISQ was used with schoolchildren, finding that 9-10 percent of children in New York City schools in neuropsychological testing give evidence of having had brain injuries 26. The BISQ also was used to screen individuals in drug abuse treatment programs in New York State; about 50 percent of those screened were found to have had probable brain injuries 13. Those who screened positive were more likely to have had multiple admissions to substance abuse treatment programs and had more mental health diagnoses, suggesting that they were more difficult to treat. The BISQ is also being used on a pilot basis to screen children being referred for special education in Denver. Preliminary analysis of their data suggests about 40 percent of this group have had a TBI.
The BISQ is currently available in a paper-and-pencil version, which is mailed to Mount Sinai for electronic scanning and computer scoring, with a report generated and mailed back indicating the probability of each person screened having experienced a TBI. A second version - password-protected and web-based, which provides the report directly to the user - is under development. Anyone interested in obtaining more information about the BISQ should contact Dr. Wayne Gordon wayne.gordon @mssm.edu.
From the Mount Sinai School of Medicine. www.mssm.edu.
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