Spinal Cord Injury Model Systems (SCIMS): One Grant Cycle Ends and Another Begins

By Lesley M. Hudson, MA
SCIMS Co-Project Director

Spinal Cord Injury Model Systems (SCIMS) are specialized programs of care that were created so researchers can study and find ways to improve people's recovery and outcomes after a spinal cord injury (SCI). On Sept. 30, 2016 the current five-year cycle of SCIMS, a U.S. Department of Health and Human Services grant program (NIDILRR) will come to an end. Also on that date, the next cycle, 2016-2021, will begin. As I write this, current SCIMS staff members are hard at work writing the Shepherd Center application for the next cycle, with the hope that the unbroken record of funding that began in 1982 will continue.

There are some key changes involved in the next cycle, however, that will affect the application in process. David Apple, Jr., M.D., founding medical director of Shepherd Center and I, who have served as the project co-directors for the Shepherd Center program, will both retire from Shepherd Center this year. Our 40 years at Shepherd have been rewarding and wonderful, and our long-term participation in the SCIMS program is one of the hallmarks of our careers in spinal cord injury medicine. In addition, Patricia Duncan, who has been the data coordinator for the Shepherd SCIMS grant for 26 years, will be leaving Shepherd Center in the near future. I look forward to writing one last article for AXIS later this year, at which time I hope Shepherd Center will have once again been successful in its application to be included in this prestigious program.

So, what have we learned from all these years of collecting and analyzing data? What do we know from creating and implementing innovative patient programs designed to improve their chances for recovery and provide them with the skills to successfully participate in meaningful lives after injury? The answers to those questions are complex, but here are some highlights. This information comes from the latest annual report of the National Spinal Cord Injury Statistical Center (NSCISC), located at the University of Alabama-Birmingham. This is where data from the 14 grantees in the SCIMS program is sent to be compiled and analyzed. The annual report is an update of valuable information on traumatic spinal cord injury in the United States.

A few highlights include (from data reported Sept. 1, 2015):

• SCIMS has entered data on 31,255 individuals since it began.
• SCIMS has entered 158,624 follow-up formson patients who have been injured from one to 40 years.
• Survival of individuals entered into this database rises steadily from the first year post-discharge through the 20^th year and then declines very gradually through the 40^th year.
• Eighty percent of subjects entered into the system are male.
• Auto accidents continue to be the most frequent cause of injury in most SCIMS centers, followed by falls, gunshot wounds and diving.
• Individuals who are injured are getting older on average: Twenty years ago the average age was 24, and now it is close to 30. As a result, many of the SCIMS locations have initiated rehabilitation programs to provide the best services for older adults.
• The largest group of individuals in the database consists of high school graduates, followed by individuals with some high school and then college graduates.
• Thirty-two percent have returned to work after injury, with 15 percent returned to school.
• The overwhelming majority are discharged from initial hospitalization to a private/home location, with just over 1 percent living in professional facilities.
• The majority of subjects interviewed has indicated satisfaction with life.
• Many have embraced numerous aspects of technology designed to make their lives easier.

In all programs, at every SCIMS location, there has been a greater emphasis on wellness after discharge. These hospitals endeavor to train their patients to remain in good health, avoid complications of injury and, in general, take the initiative for their own wellbeing and life satisfaction. This has been one of the many significant trends observed since the SCIMS program began in the early 1970s.

It has been my great privilege to have been associated with the Shepherd Center SCIMS program since 1982. Together, we have achieved so much, and the outcomes for individuals entered into the national database over the years have improved steadily. Researchers and clinicians alike have used this information to conduct hundreds of research projects and initiate many patient services that have improved life expectancy, reduced secondary conditions and, in general, enhanced the lifestyle options for individuals who have sustained traumatic spinal cord injury.

LESLEY HUDSON, MA, is co-director of the Southeastern Regional Spinal Cord Injury Model System at Shepherd Center. She is also the former executive director of the American Spinal Injury Association. She has worked in a number of administrative and research positions at Shepherd Center since 1976.