Going Above and Beyond

By Edelle Field-Fote, PT, Ph.D., FAPTA
Director of SCI Research and Co-Project Director, Shepherd Center SCIMS Program

The year 1970 seems like a lifetime ago. Richard Nixon was president, and the United States was still embroiled in the Vietnam War. We also celebrated the first-ever Earth Day, and the voting age was lowered to 18 years. Also in 1970, the Spinal Cord Injury (SCI) Model Systems Program was started with one center, Good Samaritan Hospital in Phoenix, Arizona, as a demonstration project. This project demonstrated the value of a comprehensive system of care for persons with spinal cord injury and led to the development of the SCI Model System program.

To become a SCI Model Systems Center, a center must submit a grant proposal to the National Institute on Disability, Independent Living, and Rehabilitation Research. The propoal details the quality of care delivered at the Center, as well proposes research studies that will add to our knowledge about SCI. Those centers with top-ranking grant applications become SCI Model Systems Centers for the next five-year grant cycle. There are currently 14 SCI Model System Centers, and Shepherd Center is honored to have been among these for the past 35 years since 1982.

Each of the SCI Model System Centers collects data related to the individuals with SCI who are admitted to their center, and that data is then submitted to the National SCI Database. For an individual’s data to be included in the database, they must meet certain criteria, including:

• having an injury as the result of a trauma
• being a resident of the area served by a Model System Center at the time of their injury
• being a U.S. citizen or non-citizen who is expected to continue living in the area served by a Model System Center
• being admitted to the Model System Center before the completion of their acute rehabilitation
• being admitted to the Model System Center within one year of injury
• completing acute rehabilitation at the Model System Center.

The availability of this information through the National SCI Database helps us to understand the patterns of SCI, as well as what outcomes are expected when people receive comprehensive care. This information also allows us to track information about SCI in the United States, such as:

• the number of people in the country who are living with SCI – 314 million
• the number of new cases of SCI each year – 17,000
• the proportion of men versus women who experience SCI – 80 percent versus 20 percent
• the average age of injury – 42 years
• what types of accidents most commonly lead to SCI – vehicle crashes, 38 percent

Information is collected about the individual’s condition at admission and at discharge from the rehabilitation center. This data is called Form 1 data. In addition, information is collected through telephone or mail surveys at the first anniversary of the injury date, and every five years thereafter; this data is called Form 2 data.

Beyond providing high-quality, comprehensive care to people with SCI, another obligation of the SCI Model Systems Centers is to conduct research that can contribute to improvement of care and quality of life for people with SCI. All SCI Model Systems Centers conduct research studies.

In the current grant cycle, in addition to participating in studies that are led by other centers, Shepherd Center is leading two studies that are funded by through our SCI Model Systems grant. The first is a study to gather information about a training program that could potentially be done in the home setting to improve walking ability and balance. The second is a survey study to learn more about how spasticity impacts life after SCI (see article on page 8), including how it may interfere with and/or benefit the ability to do functional activities.

In addition to the SCI Model Systems Centers and the National SCI Database, another aspect of the SCI Model Systems Program is the Model Systems Knowledge Translation Center (MSKTC). The MSKTC helps distribute the data information collected and develop educational materials based on the research knowledge gained by the SCI Model Systems Centers. The MSKTC develops fact sheets that provide information of particular importance for people with SCI. Available fact sheets provide information on topics such as spasticity after SCI, safe transfer techniques, wheelchair information and employment after SCI, just to name a few. For more information visit the MSKTC website at www.msktc.org/sci.

From the time of admission to a SCI Model Systems Center and throughout the years that follow, the clinicians and researchers at SCI Model Systems Center work to provide the best quality of care and to collect the evidence needed to continue to progress in the advancement of that care. All the while, information about the natural course of recovery from SCI and the development of treatments to promote recovery are shared among centers, with individuals who have SCI and with the public. Together, the network of SCI Model Systems Centers, the National SCI Database and the MSKTC represents a coordinated effort to improve the lives of people with SCI.

EDELLE FIELD-FOTE, PT, Ph.D., is the director of spinal cord injury research at Shepherd Center. She joined the staff in May 2014 after serving for 20 years as the director of the Neuromotor Rehabilitation Research Laboratory at the Miami Project to Cure Paralysis. Her research focuses on restoring motor function after spinal cord injury by making use of spinal pathways not damaged by injury.