Soldiers returning from war with visible head injuries are easy to spot, but what about soldiers—and civilians of all ages—who have brain injuries but no external wound? Wayne Gordon, Ph.D., notes that these cases of unidentified traumatic brain injury are far more prevalent than we realize and offers suggestions for better awareness and treatment.
John, at age 3, was hit on the head by a swing at the playground. His mother called her pediatrician, who told her that she need not go to the ER because John had not lost consciousness. Immediately, her happy-go-lucky son seemingly became a different child: anxious and clingy. For a few years thereafter, John would occasionally shake his fists up and down, out of the blue, then stop; such episodes were later recognized as undiagnosed seizures. Initially, he did well academically but not socially. He became the butt of jokes and was labeled by his teachers as unmotivated and inappropriate.
Over many years, John’s mother sought help from the schools he attended, his pediatrician, several neurologists, tutors and the like. No one was able to help. Finally, when John was an adolescent, a tutor told his mother that his reading problems were not typical and that he should be seen by a neurologist. The mother tried again. The boy was sent for a type of brain scan called single-photon emission computerized tomography, or SPECT, which showed major damage where the swing had hit his head 16 years earlier. However, the neurologist told her that there was nothing to be done; he was mistakenly of the opinion that it had been too long after John’s injury for any intervention to be of use. John’s mother persevered and found a program for him that could help address his cognitive and behavioral difficulties. Unfortunately, he was so emotionally damaged by so many years of being misunderstood—not only by everyone around him but also by himself—that despair won out. His traumatic brain injury ultimately ended in his suicide.
The brain injuries we see on the evening news, when soldiers return from war with visible, grievous wounds, are clearly evident: this is known traumatic brain injury, or TBI. Then (both in military and in civilian life) there are cases such as John’s, where injury to the brain is relatively mild, with only a brief loss of consciousness or a period of feeling dazed and confused. Because the person appears physically unharmed, the “bump to the head” may easily be forgotten. This is appropriate in most cases, because the majority of people who experience mild brain injuries recover with no lingering effects. However, it is not appropriate for the large numbers of people who experience substantial post-injury cognitive, behavioral and/or emotional problems that do not go away. Unidentified TBI occurs when these problems are not understood to be a consequence of the head injury; they may be misattributed to aging or to stress or may never be explained at all. This type of unidentified TBI is a common phenomenon, one that needs attention from medical, educational and military systems—the last because TBI is “the signature injury”1 of the wars in Iraq and Afghanistan.
The prevalence of unidentified TBI is difficult to determine both in civilian and in military populations because something that is not identified, by definition, is not counted. The best civilian estimates are based on extrapolations from the number of known injuries, which the Centers for Disease Control and Prevention place at 5.3 million (2 percent of the U.S. population).2 They acknowledge that these numbers underestimate the true prevalence of TBI, since only individuals treated in hospitals, those seen in ERs and those who die are counted. Not included are those who receive care outside of hospitals (e.g., in medical offices) or who do not receive medical attention at all (e.g., people injured in assaults, domestic violence, falls and the like). Research suggests that for every person hospitalized with a brain injury, three to five others are injured but do not receive any care.3, 4 So, the question is: Among people who have sustained a brain injury, do we have any idea how many continue to experience symptoms commonly found after mild TBI but fail to causally link the symptoms to the injury? We have data that begin to answer this question. For example, in a population-based survey† in New Haven, Connecticut, Jonathan Silver at New York University and colleagues at Columbia University found that 8.5 percent of the 5,034 people surveyed reported a brain injury with continuing challenges.5 An unpublished study at the Mount Sinai School of Medicine in New York City found a similar level of unidentified TBI: about 7 percent of a sample of people identifying themselves as non-disabled met criteria for TBI and also reported numerous symptoms associated with known TBI. If we consider such data in the context of the current U.S. population, they suggest that unidentified TBI may affect as many as 20 million to 25 million Americans. Clearly, more studies are needed to refine these estimates and get a better handle on the extent of the problem among civilians.
The number of unidentified TBIs in the military is also difficult to determine. We have learned in the past few years, thanks to media coverage, to expect large numbers of soldiers to have a known TBI. In reality, the prevalence of "probable" TBI is estimated at 19.5 percent, which translates to possibly 320,000 of those returning from Iraq and Afghanistan.6 However, these numbers are probably underestimates because post-deployment screening has yet to be fully implemented, and many soldiers do not acknowledge their mental health challenges.
The large number of estimated injuries in both civilian and military venues should raise concern, as the consequences of TBI, whether known or unidentified, can be life changing. TBI is strongly associated with multiple, often overwhelming, challenges that can undermine a person's efforts to live a productive life, leading to "social failure." For example, among prisoners, estimates of the prevalence of TBI range from 42 percent to 87 percent;7–9 for most, the brain injury preceded the start of criminal activity. TBI is also common in inpatient psychiatric and substance abuse populations, and, similarly, the injury often precedes onset of psychiatric symptoms10, 11 or substance abuse. Most of these brain injuries had gone unidentified prior to the respective studies. TBI is associated with high levels of co-occurring depression, anxiety and post-traumatic stress disorder, or PTSD.6, 12 (While some symptoms of TBI and PTSD are similar, such as fatigue and difficulty sleeping, other symptoms are unique to each disorder—heightened startle response and night sweats are unique to PTSD, for example.) Although the overlap between the estimated 320,000 returning soldiers with known TBI and the 300,000 returning with depression and/or PTSD is relatively small (7 percent), this figure includes only those with identified TBI. In Silver’s study, New Haven residents reporting TBI attempted suicide four times more often than those with no brain injury, they were more likely to be receiving public assistance or disability benefits, and they experienced poorer overall emotional and physical health.5
Researchers are trying to determine what causes the extensive and often severe emotional and behavioral consequences of TBI, but they face many challenges in that quest. Linkages between injury site(s) and specific post-trauma symptoms have not been well established, and the lesions that occur following TBI are likely to be diffuse rather than localized. For so-called mild (and often unidentified) TBI, the neuroimaging tools currently in use are not sensitive enough to detect the locus of damage. Although diffusion tensor imaging (DTI) is showing promise as a more sensitive tool, additional research is needed to evaluate its reliability, validity and ultimate utility. Furthermore, although research has identified links between specific injury sites and changes in cognitive functioning, certain sites are not firmly linked to specific emotional and behavioral consequences.
Children with TBI are at increased risk for social failure as they mature into adulthood. TBI in children is associated with poor academic performance,13 as well as problem behaviors.14 It has been estimated that 130,000 U.S. children need special education classes because of TBI but that in fact only 11 percent of children with TBI are currently enrolled.15 These estimates mean that 89 percent of such children remain fully "hidden" to their schools or are misidentified as having other types of emotional or learning disorders.
Thus TBI places a heavy burden on the injured child and adult, as well as on the family. Additionally, in The Incidence and Economic Burden of Injuries in the United States, researchers Eric Finkelstein, Phaedra Corso and Ted Miller estimate the costs to society at $60 billion annually.16 Because this estimate does not include the costs associated with unidentified TBI, the real figure is higher.
Responding to Traumatic Brain Injury
The key to reducing the personal and societal burdens is to address the needs of people with TBI appropriately. This goal cannot be achieved, however, if people with unidentified injuries remain hidden to themselves and to those who may be helpful in addressing their challenges. As with most health problems, early identification can be lifesaving. Imagine a life, like John’s, in which nothing made sense to him or to his family no matter where they turned. Without an explanation, problems are likely to get worse, as a sufferer becomes bewildered and experiences the emotional burden of becoming a stranger to himself and others. Further, parents and teachers often don’t link problems in school to an earlier injury and begin to misapply labels that don’t help and are likely to do harm.
So, how can “hidden” TBI be pulled into the light and recognized for what it is? First, parents and the medical and educational professionals who address children’s needs must become more aware of the potential results of a blow to the head, which any child may experience. Similarly, in the military, officers, medical personnel and loved ones at home must be aware of the necessity to track, for many months, soldiers who have been in combat or have experienced concussive explosions or military accidents, to determine if cognitive, physical, emotional and/or behavioral problems emerge. Such tracking is especially important when soldiers return home and try to pick up the fabric of their former lives, leaving the structure of military life behind them. And last but not least, whenever a concussion or similar injury to the brain is observed or suspected, doctors, family members and friends should take it seriously. In children, surveillance needs to persist over many years, as some problems do not emerge immediately. Unlike adults, children may “grow into” the injury—as they age, their injured brains become unequal to the more-sophisticated learning challenges of later childhood, adolescence and adulthood.
In addition, we must develop a good way to screen for brain injury. Community agencies, health care service providers and other organizations should screen populations that are known to be at risk, such as schoolchildren, abused women, athletes, people receiving social support services and members of the military. Similarly, within medical contexts, people who have experienced a non-brain physical trauma, such as a fall from a ladder, also should undergo screening as a precaution.
Such screening would both explain the circumstances that underlie problems and facilitate appropriate diagnosis, possible treatments and accommodations. The Brain Injury Screening Questionnaire (BISQ), which was developed at Mount Sinai School of Medicine. The BISQ incorporates elements of symptom checklists developed by Donald Lehmkuhl17 (at The Institute for Rehabilitation and Research) and by the Medical College of Virginia,18 and is based on the structure of a brief screening tool developed by Meryl Picard, David Scarisbrick and Robert Paluck in 1991.19 It has been used to conduct brain injury screening in a variety of populations and is the only instrument validated by the Centers for Disease Control and Prevention to screen for a history of TBI.
The BISQ first determines whether minimal criteria for brain injury, as established by the American Congress of Rehabilitation Medicine, are met. These criteria include a blow to the head, a loss of consciousness or a period of being dazed and confused.20 The questionnaire is particularly effective because to help jog the memory, particularly of long-ago events, it lists situations in which a brain injury may have happened. If a possible brain injury is so documented, the questionnaire then reviews symptoms that may be present and how frequently they occur. The BISQ can be administered via self-report or can be completed by a proxy. It is now being adapted for administration online, with immediate turnaround of results. The BISQ takes 5 to 20 minutes to complete, depending on whether or not the person has a history of blows to the head. It can easily be administered by social service agencies, in schools, in medical contexts and among at-risk populations.
A point to be emphasized is that the BISQ cannot determine that a TBI is the known source of an individual’s problems. BISQ data are used only to generate a statement that a weak, moderate or strong possibility of a brain injury exists. This feedback is based on research showing that 25 of the symptoms in the BISQ checklist are sensitive and specific to TBI—especially cognitive symptoms.21 People showing more of these symptoms are more likely to have experienced a TBI.
If a person screens positive, three avenues of response present themselves: testing, treatment and accommodations. Neuropsychological testing can more precisely document the nature of deficits that may have been caused by a TBI, and advances in brain imaging could one day be useful as well.
If testing indicates that a TBI has or is likely to have occurred, the next step is to seek treatment or implement accommodations. While available standard treatment typically focuses on cognitive rehabilitation, studies currently under way at Mount Sinai (and elsewhere) focus on treating behavioral and emotional consequences of TBI. For example, we are currently evaluating the effectiveness of a version of cognitive therapy, adapted to accommodate the cognitive challenges of people with TBI, on alleviating post-TBI depression and/or anxiety, and we are examining the efficacy of treatments for executive dysfunction. Accommodating people with TBI is important outside treatment programs, in people’s daily lives. Although TBI cannot be cured, families and educators can address its consequences in a variety of ways. Schools should obtain professional input and technical assistance to learn how to accommodate students with TBI in the classroom. Taking steps that permit a student with TBI to learn and to prosper usually helps the other students in the class as well; good teaching for the one is good teaching for all. Individuals who are not in school should seek help from a professional who has experience in dealing with TBI. Such expertise is not available in all areas of the country, but the resources that are available can be found through national and state brain injury associations.
A colleague tells the story of having sat through many meetings where professionals were talking about people with traumatic brain injury and the challenges they face. One day she realized that the cognitive problems she had experienced since childhood may have resulted from the two blows to the head she had experienced as a child as a result of falls; in one incident she remembered she was lying on the ground in her backyard as a young child, having just fallen from her perch on the top of a swing set, landing on the top of her head and feeling dazed for a while. She had never linked the learning and memory problems she was troubled by over the years to these long-ago episodes. There is no way of knowing without doubt that her continuing problems are the result of the two childhood accidents, but she now conceptualizes her problems in this way, which allows her to explain her challenges and see more clearly the need to compensate for problem areas. For my colleague, for John, for returning soldiers and for the millions of civilians suffering from traumatic brain injury, we must improve our response to this underestimated problem.