The State of the Science in Spinal Cord Injury Rehab

United Spinal’s president and CEO Paul J. Tobin and K. Eric Larson, SVP of Membership and Chapter Services, attended a meeting at the White House in November to discuss the latest research findings on spinal cord injury rehabilitation.

The meeting highlighted recommendations from a June conference titled “The State of the Science (SOS) in Spinal Cord Injury (SCI) Rehabilitation: Informing a New Research Agenda,” which was held in Washington, DC.

The SOS conference brought together more than 450 scientists, clinicians and persons with SCI to identify goals for SCI rehabilitation research over the next 10 years.

Four themes emerged as playing a critical role in the future of SCI rehabilitation research: 1) neurologic and functional recovery; 2) technology for mobility and function; 3) aging and secondary conditions; and 4) psychosocial, vocational, and quality of life outcomes.

The White House meeting provided an opportunity to further discuss these themes with researchers and other interested stakeholders.

“The opportunity to represent our constituents in this process was fantastic, and I can tell you our presence and input was not only welcomed, it was actively sought not only the folks at the National Institute on Disability and Rehabilitation Research, but by the researchers themselves,” says Larson. “I have to say, it was really exciting to see people this high up in the administration listen to our top line findings with such interest and enthusiasm.”

Initial research recommendations from SOS included studying the effectiveness of community-based rehabilitation programs; promoting collaboration among scientists, clinicians, allied health professionals, caregivers, and people living with SCI; increasing access of consumers to evolving assistive technologies; and designing community and corporate programs that enhance employment and employment opportunities for people living with a spinal cord injury.

SOS Highlights

The International Conference on Spinal Cord Medicine and Rehabilitation  is the third in a series of combined meetings of two heavyweights in the SCI research arena–the International Spinal Cord Society (ISCoS) and the American Spinal Cord Injury Association (ASIA)–and strives to advance the treatment and care of people living with spinal cord injuries (SCI). They’ve been collaborating since 2002 to create common international data sets on people living with SCI around the world to accurately compare injuries, treatments, and outcomes.

The SOS  conference, the first of its kind for SCI rehabilitation research in the United States, is a portion of this larger conference.  SOS  was organized in response to the changing landscape of SCI care and anticipated advancements and accomplishments over the next 10 years. Clinicians, researchers, administrators, as well as people with SCI and their families realize that the available interventions and treatments are causing unprecedented and rapid alterations in our view of SCI care and the outcomes from such severe neurologic trauma.

Below is a glimpse of some of the initial research recommendations highlighted at SOS.

Changing Trends

Michael J. DeVivo, Dr.P.H., professor in the Department of Physical Medicine and Rehabilitation and director emeritus at the National Spinal Cord Injury Statistical Center, uncovered changing trends in SCI—notably a rise in severe SCIs and higher rates of SCI among Americans over the age of 60.

These trends can potentially lead to a higher percentage of persons with SCI not meeting eligibility criteria for clinical studies due to pre-existing and secondary medical conditions. The end result: less favorable treatment outcomes for a large portion of the SCI population compared with those from 20 years ago.

DeVivo explains, “The mortality rate will be higher, there will be more medical complications, more discharges to nursing homes, lower re-employment rates, and less functional independence now compared to the past. To make a fair assessment of outcome trends and see whether we are really making progress, we need to compare outcomes of people at the same age and with the same injury severity over time to determine whether outcomes are getting better.”

For this to happen, more sophisticated statistical techniques will be required.

A New Approach to Employment

Lex Frieden, United Spinal Association’s Chairman of the Board and Andrew J. Winnegar, are calling for adequate private and public sector funding to fuel research that solves the poor numbers of employed people with disabilities.

In the US, it’s only 35 percent compared with 64 percent of working age adults without disabilities. Even those with disabilities who are working and have advanced degrees leave jobs at faster rates after age 40 than
the general population.

They contend that rehabilitation and medical providers need to better understand the employment demands of people with disabilities to facilitate the most appropriate support, training and job opportunities.

More flexible work environments are also needed–such as work-at-home options—as well as vocational rehabilitation opportunities that match people’s interests.

Future Impact of Technology

Michael Boninger of the Department of Physical Medicine and Rehabilitation in Pittsburgh, PA and colleagues reported on how technology will impact SCI in 10 years.

They highlight next generation technology that will impact mobility well into the future, from functional electrical stimulation devices, robotics, neural prostheses, exoskeleton systems, and direct brain interfaces, to new and more reliable power sources and computer processors.

A major concern is how to effectively apply and deploy this technology while making it affordable to people with disabilities.

“If third party payers do not approve a device it will only be available to the wealthy and will likely fail for lack of a market. Companies with great ideas have gone out of business, because their products could not be coded and reimbursed,” states Boninger and colleagues.

One device that comes to mind is the IBOT™, which was deemed not medically necessary and failed due to the absence of a successful reimbursement model.

Research will need to explore cost benefit models that take into consideration the medical and functional impact of mobility products. The research community must also advocate for a broader view on the impact of these products on daily living and quality of life rather than focus on “medical necessity”—an interpretation that should not be left to regulators, third party payers or policymakers.

You can take a look at all of the initial research findings at length by visiting www.asia-iscos2011.org and clicking the “State of the Science” tab at the top of the page.

Full  findings from the SOS conference are scheduled to be published in the April, 2012 issue of Spinal Cord (Nature.com).

Tom Scott
Web Editor