Brain-injury experts meet to shape agenda for care, research

Creating a registry of veterans who have suffered a traumatic brain injury (TBI) and tracking long-term effects of the condition were among the priorities outlined at an international conference of TBI experts hosted by the Department of Veterans Affairs (VA) on Nov. 17 - 18, 2008.

As part of his polytrauma care, Marine veteran Jason Poole spent well over a year in therapy with VA Palo Alto Health Care System occupational therapist Daniela Lita.

TBI is estimated to affect some 20 percent of troops injured in Afghanistan or Iraq. The cause is usually a blast. Most of the injuries are considered mild, but even these cases can involve serious long-term effects on memory, mood, focus and other areas. VA has made TBI care a key part of its mission. The agency convened the conference to help set goals for studying the problem and improving care.

After presentations by Secretary of Veterans Affairs Dr. James Peake and other VA officials, the event featured roundtable discussions among some 25 leading researchers and clinicians from the U.S., Canada, United Kingdom, Israel and Australia. The forum centered on three questions:

  1. What are the best approaches to identify TBI and related stress disorders;
  2. What are the most effective treatment and rehabilitation strategies; and
  3. What are the latent problems that may arise long after the injury?

Differences between civilian, military TBI

In discussing ideal approaches to diagnosis and treatment, the panel emphasized the differences between civilian and military TBI. Marines and soldiers typically experience TBI in combat situations that may involve other physical injuries and intense, ongoing mental stress.

"Many of our injuries are not just blast injuries," said Lt. Col. Michael Jaffe, director of the Defense and Veterans Brain Injury Center. "There's the blast itself, plus the roll-over or crash of a vehicle and possibly flying debris. Then there's the question of whether the person returns to the conflict or is taken out of combat. There are some similarities to TBI in civilian life but in combat there is … greater risk of additional injury."

In particular, the co-occurrence of TBI with posttraumatic stress disorder (PTSD) in combat troops is a major issue that complicates diagnosis and treatment. The two conditions can overlap and mesh in complex ways. According to Matthew Friedman, MD, PhD, director of VA's National Center for PTSD, blast injuries often entail substantial emotional trauma that leads to PTSD.

"It can be an incredibly traumatic event," said Friedman. "Having a concussion [mild brain injury] is frequently a marker for the development of PTSD."

Early evaluation in combat zone would be ideal

The panel of experts validated the current VA approach to diagnosing TBI, which is designed to fully address other physical and mental illnesses that may also be present. The VA process starts with a brief initial screening questionnaire for all Iraq and Afghanistan veterans. Those who screen positive undergo additional exams and tests.

"The professionals that evaluate patients have a lot of experience with TBI," said Barbara Sigford, VA's national director of Physical Medicine and Rehabilitation. "Neurologists, psychologists and others take into consideration a wide range of symptoms and take a detailed history. They ask if the person was exposed to a blast and if so, how far away they were from the blast. They'll also ask other questions like whether there was falling debris or another injury at the time. They'll ask whether symptoms [such as headaches or memory problems] have persisted since the injury."

Sigford agreed with the other panel members, though, that early diagnosis by medics in the field and thorough documentation of the circumstances of the injury and resulting symptoms would be a great help. "Doing the evaluation long after the event is not ideal. We'd endorse doing an evaluation in the field—that would be ideal."

In TBI, as in Alzheimer's disease and many other neurological disorders, there are not yet reliable biomarkers that can be detected through brain scans, blood tests or other lab procedures to verify the diagnosis. The Department of Defense and VA are pursuing research aimed at developing such measures—including quick, easy-to-administer tests that would make field evaluations of TBI more practical. But the group noted the need for additional efforts along these lines.

Given the current degree of uncertainty that doctors face in evaluating mild TBI, the experts agreed it would make sense to move toward a "graded" system that qualifies a diagnosis as possible, probable, or definite. Such an approach is used with Alzheimer's disease.

Exploiting newer brain scan technology

Even when evaluations are done much later after the injury, newer brain-imaging methods could prove quite useful, suggested some panel members.

"I often hear that MRI [magnetic resonance imaging] isn't sensitive enough to capture mild TBI, but I think that's premature," said Anthony Cacace, PhD, of Wayne State University. "The imaging modalities we have available now [in research] are quite sensitive. We have a lot of exciting imaging methods that look very promising."

One example cited by the group was diffusion tensor imaging, a relatively new form of MRI that tracks how water molecules move through the brain's white matter. VA researchers at several sites are exploring the use of this method in TBI, schizophrenia and other brain disorders. The panel stressed the importance of continued research on this and other imaging methods.

Families crucial to treatment

As the discussion shifted from evaluation to treatment, a clear consensus emerged on the importance of an interdisciplinary approach. Such an approach is used in VA's polytrauma system of care, where TBI treatment typically involves a mix of therapies—cognitive, speech, occupational, physical—plus medication to ease specific symptoms such as pain or anxiety. Jennie Ponsford, PhD, of Monash University in Australia, noted that anxiety often develops along with TBI because patients may be "concerned about going into social situations and not being able to cope and doing something inappropriate."

Vision rehabilitation specialist Paul Koons provides therapy to Air Force veteran Angela Strotz at the Palo Alto VA. They are working with a Neuro Vision Technology scanner, used to assess and train patients with brain-related vision problems.

Beyond caring for and educating the patient, TBI demands a comprehensive approach that also involves family members: educating them, supporting them through stressful times, and seeking their feedback about how their loved one is doing. Robin Hurley, MD, PhD, of the Salisbury (N.C.) VA and Wake Forest University, noted that her clinic is working on a TBI toolkit and urged VA at the national level to boost the production of educational materials for patients and families alike.

"There's no question that educating family members can have an effect," she said. "TBI is hard to diagnose and often patients are identified when family members notice a change in their behavior."

Ponsford of Australia pointed out that family members can also report on responses to drugs, such as to those given to help with attention. "[The patient] may say they do not notice a difference after the medication, but if you talk to the family they might say they see a world of difference."

Sigford added, "The family and the veteran are the most integral part of the treatment team."

Avoiding caregiver burnout

Addressing long-term rehabilitation and community reintegration, the group again underscored the importance of family.

Friedman noted that family support is "one of the most protective factors" in PTSD and suggested it plays a similar role in TBI.

Ponsford observed that "young folks who get TBI before marriage and development of life goals and a career can do worse emotionally than people who get injured later in life and have an established family and career."

Notwithstanding their supportive role, family members themselves endure great stress that can lead to marital strife and broken homes. The PTSD symptoms that may go along with TBI are often to blame.

Ponsford: "Many of these vets go back to their families and marriages break up because of the problems associated with PTSD."

The stress on families can be even more acute in certain situations, said Kathy Bell, MD, of the University of Washington. "Caregivers, especially if they are caring for younger veterans, might start dropping out. They can't sustain the effort of providing for a vet with a severe brain injury for years. Or they may be older themselves and struggling with their own health problems."

Sigford described VA's role in supporting family members: "We've got case workers and social workers evaluating each situation. … For example, in cases of severe TBI, we have home health or respite workers that can go in and give family members a break."

John Whyte, MD, PhD, of the Moss Rehabilitation Research Institute, asserted that more work needs to be done to "define family support" and to identify the best models for helping families cope.

Transitioning back to work, school

Army veteran Hanuk Etnoffi, a native of Ethiopia, receives driving instruction from Palo Alto VA occupational therapist Jean Gurga.

Another area where veterans with TBI need support is employment. Jaffe of the Defense and Veterans Brain Injury Center said his team has "partnered with the Department of Labor to work with employers to get them to hire vets with TBI or PTSD."

Veterans who had a career or steady job before their injury might need to relearn tasks or find ways to compensate for lost abilities. Younger veterans might need to first learn new work skills, even as they cope with the physical, emotional and cognitive effects of their injury.

"Those who are 18 or 19 when they sustain a TBI and don't have a career or a job to go back to might have to develop work habits and a career at the same time they are dealing with TBI," noted Bell.

Sigford pointed out that VA assists many veterans with mild to moderate TBI in going back to school or work. Those with more severe injuries can benefit from other VA-sponsored programs.

"For people who are more severely injured and who can't work or go to school, we have a number of ways to get them engaged in leisure or recreation activities [such as sailing, golf or tennis]. When people are engaged in this way they often see an improvement in self-confidence and other markers of mental health."

Long-term services and research needed

The panel emphasized that the needs of veterans with TBI extend past the treatment period and even beyond their initial adjustment back into family, work and community roles.

John Corrigan, PhD, of Ohio State University, underscored the need for research into the long-term consequences of TBI. He mentioned anxiety, depression, and even psychosis as some of the conditions that could develop over time in the TBI patient.

"You can teach a lot about stress reduction and build skills, but three years later they might still be losing their homes. There are long-term consequences of TBI, particularly in the more severe cases. It is a chronic illness model and not just an acute problem. You have to provide ongoing services."

In addition to long-term care models, the experts said longitudinal research is needed to learn more about the course of TBI and its complications over time.

"Are there ways to prevent the long-term problems?" asked event moderator Enriqueta Bond, PhD, recently retired president of the Burroughs Wellcome Fund. She noted that "some of these issues might be easier to study in the VA system because some veterans come back year after year for care."

The discussion foreshadowed an Institute of Medicine report that was released in early December. The report, titled "Gulf War and Health Volume 7: Long-Term Consequences of TBI," suggests that TBI from blasts may be linked to long-term health issues such as dementia, aggression, depression and symptoms similar to those seen in Parkinson’s disease. But the report also cited the need for more scientific data on blast-related TBI, as most of the existing medical literature on the topic relates to TBI from other causes, such as vehicle crashes or falls.

In the VA roundtable, Friedman cited examples of long-term VA studies, such as one that has followed Vietnam veterans for decades, that could serve as models for future research on TBI.

Sigford confirmed VA's plans to start a registry of every veteran who has experienced a blast injury. The project will be useful for research in many ways, she said. "Say that someone with five blast injuries develops Alzheimer's disease at age 52—with the registry we can go back and look for other people who have had a similar number of blast injuries and start tracking the cases of Alzheimer's."

Along with long-term research, the panel agreed on the pressing need for studies comparing TBI outcomes at different VA sites, so best practices can be promoted system-wide.