National Study Involving Shepherd Center Shows Encouraging Long-Term Outcomes for People with SCI

By Lesley M. Hudson, MA
SCIMS Project Director for Shepherd Center

Though some challenges remain for people living with spinal cord injury, Shepherd Center and Spinal Cord Injury Model Systems (SCIMS) data show some significant reasons for encouragement. Especially heartening for people who have lived 25 years or more with spinal cord injury is an increase in life expectancy, as well as an improved quality of life.

Shepherd Center and other elite rehabilitation hospitals designated by the federal government as Models Systems of Care for spinal cord injury have garnered these insights from decades of data collection that is part of the Model System purpose. We gather this data by interviewing discharged patients for an extended period of time after their injury.

For Shepherd Center, which has been continuously designated as a Model System since 1982, the longest length of data collection is 30 years. There are not many of these long-term patients – partly because in 1982 Shepherd did not admit nearly the volume of patients it does now and partly because a certain percentage of the patients seen 30 years ago are now deceased. But there is sufficient data in the entire SCIMS database, which includes Shepherd Center information, to make observations about people who have lived with spinal cord injury for several decades.

Based on that data, here is what we know about their lives beyond injury:

• Survival rate at 25 or more years after injury is 60 percent; this number has been climbing steadily over the years.
• 37 percent of the group is married; 32 percent is single; 24 percent is divorced.
• 97 percent of the group surveyed lives in private residences, with less than 2 percent residing in custodial care environments, such as nursing homes.
• Household income for 41 percent of the group is less than $25,000; 22 percent report their annual income to be between $25,000 and $50,000; 14 percent between $50,000 and $75,000; and 22 percent at $75,000 or more.
• Education has improved over time. For example, at the time of injury, only 6 percent of participants had a college degree. But at 25 years post-injury, 22 percent of that same group had a bachelor’s degree or higher.
• Employment status does not fare as well as education. At the time of injury, 62 percent of this group was employed, but at 25 years post-injury, that number had dropped to 35 percent. Conversely, 13 percent were unemployed at injury, and at 25 years post-injury, that figure was reported at 40 percent.
• Individuals who have been injured 25 years or more spend an average of 21 days a year in the hospital. The primary reason is urinary tract infections, followed by skin, digestive and respiratory issues.
•  In the subjective areas of life satisfaction and self-perceived health status, the news is encouraging. For this report, life satisfaction is scored on a scale of 5-35, with 35 being the highest life satisfaction. At 25 years after injury, the group reported an average score of 24. The same group, at one-year post injury, reported a score of 20. Regarding self-perceived health status, at 25 years post-injury, 78 percent of the group reported that their health was good to excellent, while 18 percent said their health was fair to poor. Just one year post-injury only 63 percent of the same group had reported that their health was good to excellent.

This snapshot of people who have lived for more than 25 years with spinal cord injury indicates that not only has life expectancy lengthened for individuals with SCI since the inception of the SCIMS program in 1972, but overall, many of the leading indicators show the quality of that extended life expectancy is good.

The two areas that continue to present challenges to this group, and to the spinal cord injury healthcare professionals who care for them are level of employment and average number of days hospitalized each year. We are hopeful to see positive trends emerge in these two areas as data collection continues for decades to come.

LESLEY HUDSON, M.A., is the project director of the Southeastern Regional Spinal Cord Injury Model System (SCIMS) at Shepherd Center. She has worked at Shepherd Center since 1976 in various capacities. Much of her career has focused on research conducted under the SCIMS grant. She is also executive director of the American Spinal Injury Association (ASIA), which is headquartered at Shepherd Center. Lesley can be reached at lesley_hudson@shepherd.org.