The Brain Injury Data Project: One Soldier's Story
Data from more than 10,000 brain injury patients -- including hundreds of variables and outcomes -- is being tracked in an ongoing government project that began 26 years ago. A Palo Alto veterans' hospital shows how important this information has become in helping patients establish and meet expectations for recovery.
"You've been blown up, dude."
Those were the first words Corporal Toran Gaal heard upon awaking from a coma in a hospital bed in Walter Reed National Military Medical Center. Gaal was grateful that his brother, a former Marine, was so blunt.
A month earlier, right before dawn on June 26, 2011, the 24-year-old Marine squad leader had stepped on an improvised explosive device in Sangin, Afghanistan. When he opened his eyes at Walter Reed, Gaal wondered why he wasn't in country. Who was leading his men?
He says his limbs were an afterthought. The left leg would be amputated above the knee. Doctors would unsuccessfully try to salvage the right above the ankle, but it would eventually be taken at the hip. His brain's left frontal lobe was severely damaged. In less than a second, the trajectory of Gaal's life had changed. The infantryman, the college basketball player, the man always in control -- that person now lived in the past.
Gaal somehow manages not to dwell there. Still in recovery at the Naval Medical Center San Diego, he walks on prosthetics, rows, drives a car, and has plans to become an emergency services dispatcher. "I can't go back," he says. "I can't say what if, what if, what if. I'm happy with what I have. I'm alive."
Gaal's resilience can seem miraculous. He thinks of it as a trait he earned on the basketball court in adolescence and one that the military further "refined." Either way, his grit was a force that Gaal's doctors at the VA Palo Alto Polytrauma Rehabilitation Center, where he spent the first five months of his recovery, did not take for granted. Instead, it became leverage in their mission to see that Gaal's healing surpassed the average outcome for his injuries.
This was no wishful thinking; his doctors could compare Gaal's case to datasets based on thousands of civilian patients with brain trauma and other catastrophic injuries. Every day, Gaal's doctor, physical therapist, nurse, and case manager tapped into his urgent need to thrive, and pushed him just a little harder. Gaal knew they cared deeply, but it was hard to see that it was science.
Dr. Odette Harris, a neurosurgeon and associate chief of staff of polytrauma at the Palo Alto center, is a data hound. To her, resilience can be a "nebulous" term.
What she wants to know is how recovery might be measured in outcomes: how long will a patient stay in the hospital; will he be able to walk again; might she regain the ability to speak? Even the strongest willed patient is tied in some way to the fate of others who came before, demonstrating what the human body is capable of under a certain set of circumstances.
For a polytrauma physician, creating a treatment plan is more than an educated guess; it's built on decades of data known as the Traumatic Brain Injury Model Systems (TBIMS). Started in 1987 by the federal government, TBIMS is a prospective study that has tracked the recovery of more than 10,000 brain-injured patients using hundreds of variables and outcomes, including length of stay and what's known as a functional independence measure.
The patients recorded in TBIMS are mostly civilians. Three-quarters of them are male and half were injured in car accidents. A small but important subset also suffers spinal cord injuries, burns, and other life-altering wounds.
The database has become the gold standard for clinically describing the variations and possibilities in these patients' outcomes. Two years ago, the Department of Veterans Affairs aligned all of the data for its five national polytrauma centers so that staff could compare themselves to private sector facilities. These facilities treat the gravely wounded: Each patient has an injury to more than one organ system.
The VA also began its own research study to create a parallel database that reflected the difference between civilian and combat injuries, accounting for things like embedded shrapnel and infections born of bacteria unique to Afghanistan. Of the more than 50,000 service members wounded in Iraq and Afghanistan who are considered polytrauma patients, 1,600 have moderate to severe brain injuries, 1,400 are amputees, and 900 were severely burned. So far, there are 303 veterans in the new database.
Though Harris and her team are armed with data to benchmark the recovery of their patients, they deploy it judiciously among themselves.
"I don't actually stand at the bedside and say to the family, 'You know, your family member is on the higher end of traumatic brain injury patients, therefore I'm a little less optimistic,'" Harris says. Instead, it's about guiding expectations and directing staff to focus on an evidence-based treatment plan that will, for example, keep a patient on target to recover at the appropriate pace or make measurable improvements in cognition and speech.
Gaal did not know that this data from the experiences of thousands of patients was guiding his recovery, and it's a realization that doesn't make a difference to him. "I knew they were going to give me the help I needed," he says. "They don't need to be up front about it."
Dr. David X. Cifu, the VA's director of the physical medicine and rehabilitation program likes to think of the acute and long-term TBIMS data as a roadmap for recovery.
Staff at polytrauma centers, for example, can plug in seven factors and get a patient's expected length of stay at a rate that Cifu says is about 50 percent accurate. Those might seem like lousy odds, but for a patient with a TBI, an amputation and severe burns, knowing how you compare to 10,000 people who have had similar injuries is something tangible.
It also allows hospital staff and families to begin immediately planning for that projection. If there's a setback, like a seizure or an infection, both groups can rally around the road map, using it as motivation for realigning the patient with his treatment plan. Cifu says the staff will remind a service member whose confidence or determination has flagged that pain brings recovery: "If you struggle harder, tomorrow will be better, and we're going to keep laying on more struggle."
Gaal knows this well. He was motivated, privately setting goals outside of physical therapy sessions and exercising in the gym or his room. He drew on old basketball workouts to improve his core strength. He remained a fighter, but there were often moments of despair.
One day he refused to attend a groundbreaking ceremony attended by VA Secretary Eric Shinseki on the hospital's grounds. Gaal couldn't yet independently move himself from the bed to a wheelchair and cited that as part of his reluctance. The center's program director, Pawan Galhotra, and social work supervisor, Scott Skiles, safely transferred him by the sheet of the bed to his wheelchair and escorted him out. "They pushed me," Gaal says. "They wouldn't allow me to sit around in my room and sulk about anything."
Galhotra, who came to the VA from the private sector, says this diligence is necessary: "It's very important to emphasize that because we have resources doesn't mean we can sit back and say we're resource rich. I constantly challenge the team to say how are we pushing this individual forward."
In the last fiscal year, 92 percent of the patients at the Palo Alto center were discharged to a non-institutional setting, outpacing the national average by nine points. The typical length of stay is longer than for TBIMS patients, but the VA's charges have unique injuries and also are covered by government insurance that does not set arbitrary limits on hospitalization. (The average cost of the first year's care for a polytrauma patient is $136,000.)
Where the center really shines, Harris says, is its functional independence measure (FIM) at discharge, an 18-item scale that measures rehab progress. Palo Alto's FIM is 120 compared to an average TBIMS score of 93.
Cifu acknowledges that the Palo Alto center is "ahead of the curve," thanks in part to Harris' intimate knowledge of the data. The goal, he says, is to use these means and help driven patients and their families create a new normal.
"Even when they can climb mountains, they're not exactly the same as they were before," he says. "This is not Hollywood. If you've lost a limb, you've lost a limb."
Gaal is energized by the possibilities of his future. He could play wheelchair basketball, but prefers to focus on his new passion for rowing. Though he's heartbroken at the prospect of never again leading a crew of men into combat, as an emergency services dispatcher, he'd be responsible for people's lives -- a duty he relishes.
If he's held onto anything of his former life, it's the sense of mission that guided his recovery: "My Marines have been a huge part of my way of getting through this. If I quit, what does that show them? They know me as this person before, so they're not going to see me give up."