Spinal cord injuries are life changing. Resulting from automobile collisions, gunshots or other physical trauma, they can impact all areas of an individual’s life, often causing full or partial paralysis and a range of complications, from depression to respiratory failure.
MUSC researcher James Krause, Ph.D., associate dean for research and director of the Center for Rehabilitation Research in Neurological Conditions, knows this firsthand. As a teenager, he was paralyzed while diving into a swimming pool.
For more than 40 years, Krause has studied the long-term effects of spinal cord injury (SCI) with the goal of increasing lifespans and standards of living, while coming to terms with the implications of his own injury.
Now, five new grants totaling more than $2.6 million will help him continue and expand that work.
“These grants are all very different from each other in methodology and will allow us to attack the problem of what happens to people after spinal cord injury in different ways,” Krause explained.
The first of four grants awarded by the U.S. Department of Health and Human Services’ Administration for Community Living (HHS/ACL) will help extend Krause’s ongoing 45-year longitudinal study on aging and spinal cord injury. A longitudinal study gathers data from the same subjects over time and can reveal patterns that shorter “snapshot” studies cannot, helping researchers identify long-term trends. For example, when participants first enrolled in Krause’s study in the early 1970s, medicine was far different than it is today. The life expectancy of people with spinal cord injuries was believed to be very short, and the aging process for those with a disability was poorly understood.
Krause’s project is now the most longstanding study of disability outcomes anywhere in the world. With more than 750 participants contributing self-assessments every four or five years, this data helps reveal the complex relationship between aging and quality of life for those with spinal cord injuries.
A grant from the Department of Defense will allow Krause and his team to conduct in-depth interviews with spinal cord injury survivors to better understand and predict life-changing and life-threatening health events as they age.
A qualitative, open-ended dialogue with participants will allow Krause’s team to uncover short-term phenomena that his longitudinal study might miss, he said.
“A lot of times, we see that people with spinal cord injuries are healthy for a very long time,” Krause continued. “But all of the sudden, one thing will go wrong, which leads to another and another, and they just aren’t able to recover.”
Krause calls this a negative health spiral and hopes to identify the common risk factors that may precipitate it. If he can do that, he hopes he can help individuals with spinal cord injuries avoid acute problems that can quickly snowball.
A third grant, also from HHS/ACL, will allow Krause to triangulate his research with yet another method of gathering data: administrative billing records from hospitalizations.
“What we hope to be able to do with this study is link risk factors determined by our self-report assessments to hospital records, which sounds kind of mundane, but what that gives us are the causes and the costs of acute hospitalizations,” Krause said. “We’ll be able to look at, for instance, the effects of exercise, smoking and other lifestyle factors. We’ll be able to determine the risks and costs of each. We’ve never had that sort of data before.”His fourth grant will allow the team to examine emergency department visits, related hospitalizations and reasons for Emergency Department utilization after spinal cord injuries. Awarded by the HHS/ACL, this grant will pair MUSC with the Atlanta-based Shepherd Center, a private, not-for-profit hospital and federally-designated SCI model system that specializes in spinal cord and brain injury treatment and rehabilitation. “To be a designated model system, you have to be on the cutting edge of treatment and have a focus on research,” Krause said. “Model systems share a common national database, so by linking our data to data from the Shepherd Center and other model systems, this grant keeps our work connected to national efforts.”
Krause’s final HHS/ACL grant is the one he is most excited about. It will fund the development of web-based tools to help people living with spinal cord injuries and their providers assess risk factors to make better behavioral and treatment decisions. These tools will incorporate data from Krause’s other projects to provide as complete a picture as possible of life after spinal cord injury.
“People will be able to go online and answer questions about themselves and their circumstances, and this tool will tell them how that affects their likelihood of ED visits and hospitalizations, their longevity, their quality of life,” Krause said. “It pulls everything together. People with spinal cord injuries will be able to say, for example, how will smoking affect my longevity? How does my employment status affect my health? And it will give them the information to either change their behavior, or not. They will be able to accurately evaluate their own behaviors based on data, and providers will be able to make evidence-based treatment decisions.”
He said he hopes to rely on stakeholders’ feedback to make these tools much more specific and user-friendly than any that currently exist.
Krause believes an important strength of these five grants is that each builds upon the others and uses a different methodology to answer the same sorts of questions.
Previous spinal cord injury research, Krause said, has focused too much on health factors that people have little control over. His research looks not just at health, but also economic, psychological and behavioral factors.
Each of his grants will provide researchers, providers and people with spinal cord injury unique tools, both at the individual and policy levels.
“At the individual level, we want to help people become aware of their risks and identify those things they can do to prevent negative health events,” Krause said. “At the policy level, we hope to help policymakers understand how to more effectively use resources to save money and improve lives.”
For example, income and employment status are among the best predictors of life expectancy and quality of life among those with spinal cord injuries.
“Income brings tangible benefits,” Krause explained. “And when people go to work, they have a routine, a support network. They’re healthier, and they’ll cost the health care system less in the long run. Programs to keep people healthy and working are just good business.”
If hospitals, health insurance companies and legislators in Washington, D.C., and Columbia understand that, he hopes they will invest in employment and educational programs to help individuals with spinal cord injuries make healthy changes that will benefit everyone.
As this type of research grows in importance nationally, Krause’s ambition is to continue to expand MUSC’s capability to conduct SCI research and treat those with spinal cord injuries. His five grants go a long way toward making that happen.
“It’s nice to get the money,” he said. “It’s a testament to the scope and quality of the work we’re doing, but ultimately, it’s going to give us the resources to help people with spinal cord injuries. And that’s what’s important.”