Body
When people acquired traumatic spinal cord injuries 50 years ago, the general outlook for their lives was bleak and relatively short. They were prone to repeated urinary tract infections and debilitating pressure wounds, which led to repeated hospitalizations and frequently death. For those who survived, their injuries often amounted to a form of home confinement because of physical barriers in their communities, and the prospect that they might return to work was remote.
But half a century later, much has changed in terms of treatment, rehabilitation outcomes and societal barriers. Many people with spinal cord injuries live normal lifespans and report high levels of satisfaction with their lives even as a cure for spinal cord damage remains elusive. Those changes and many others are documented in a vast longitudinal database known as the National Spinal Cord Injury Model Systems Database, that is made up of data gathered by 18 major medical centers around the country, including Shirley Ryan AbilityLab. These centers are called Spinal Cord Injury Model Systems (SCIMS). The model system at Shirley Ryan AbilityLab is the Midwest Regional Spinal Cord Injury Care System (MRSCICS).
Started in the 1970s with federal funding, the SCIMS Database tracks people with traumatic spinal cord injuries beginning with their initial hospitalization and then follows up with them throughout the remainder of their lives. SCIMS researchers collect follow-up data at one year, five years and then every subsequent five years to see how participants are doing physically, mentally, economically and socially.
Although the database reflects the experiences of fewer than 10% of people with spinal cord injuries around the country, it has resulted in improved care and highlighted patterns and trends that might otherwise have gone unnoticed, rehabilitation researchers say. “The only way to appreciate long-term outcomes of rehabilitation care is to follow people long-term,” says Allen Heinemann, PhD, Director of the Center for Rehabilitation Outcomes Research (CROR) at Shirley Ryan AbilityLab, who co-leads MRSCICS. “There are variations in practices across medical centers. There are variations in terms of sex, race and ethnicity among patients. It’s a unique resource. There is no other rehabilitation database that has followed people for such a long time.”
SCIMS researchers contact people with spinal cord injuries for a lengthy phone interview. Over time, the survey questions have evolved, becoming more specific about medical outcomes such as chronic pain and issues around social participation and accessibility, according to CROR Project Manager Jenny Burns, who has worked with SCIMS since 2019. “The phone interview has gotten much longer,” she says. “That demonstrates how much we have learned about the social determinants of health and how important those nonmedical topics are to quality of life and overall functioning.”
One thing that stands out to her is that people who can participate in their communities consistently report having a higher quality of life. “Those are questions we have added to the database because we’ve seen how important those areas are. We didn’t ask about community participation 50 years ago but now we do.”
David Chen, MD, who oversees the Midwest SCIMS project with Heinemann, and has treated spinal cord injury patients for decades, also sees important progress. “The database has been very productive and has benefitted our patients. We’ve learned about what individuals experience during their lives in terms of complications and changes as they age. That knowledge has influenced how we manage and treat these individuals.”
For one thing, clinicians have learned how to reduce medical complications, which has increased longevity. But as their patients live longer, Chen and others are rethinking some of the medical advice they formerly dispensed. “We used to advise people with paraplegia to use manual wheelchairs. We’d say, ‘You need to be as strong as you can.’ Now some of these people are experiencing degenerative changes to their shoulders because their arms and shoulders have been asked to do what their hips would do. Now we’re pausing and saying, ‘Maybe there’s a place for power-assist devices after all.’”
Chen also has noticed that as spinal cord injury patients live longer, they become more like everybody else dealing with aging. For instance, their rates of cardiovascular disease, hypertension and cancer increase. “These aren’t usually important issues for younger patients but now that they’re getting into their 40s, 50s and 60s, it is important. Our patients need internists and primary care physicians just like everybody else.”
The database also has been a critical resource for rehabilitation researchers who have mined it on a wide range of topics. For instance, the data show how drastically rehabilitation lengths of stay have shrunk for people with spinal cord injuries, from 110 days in the 1970s to 37 in the 2020s, Heinemann notes.
Healthcare demographers also have found it a rich resource. Back in the 1970s, people typically experienced spinal cord injuries while they were in their 20s but the average age has increased to 43. Much of that change relates to fall-related injuries among the elderly, which correlates with overall aging of the U.S. population, researchers say. Such conclusions are “helpful for planning healthcare needs. It’s helpful for policymakers,” says CROR Research Scientist and Director of the SCIMS Database operations with MRSCICS, Anne Deutsch, RN, PhD, who has used SCIMS in her own research. “Older adults with spinal cord injuries often have more co-existing conditions. Consequently, they’re more likely to need more rehabilitation services and follow-up.”
Unfortunately, the database also shows that some things have not changed: Car crashes continue to be the leading cause of injury. Men are much more likely to sustain traumatic spinal cord injuries compared with women who only make up about 20% of SCIMS participants. And Black patients continue to make up a disproportionate share of new traumatic spinal injuries: 25%, which is almost double their proportion of the general population.
Amanda Botticello, PhD, MPH, a social epidemiologist at the Kessler Foundation in New Jersey, looks at SCIMS data from another angle: the social determinants of health. “We’re trying to correlate the overall characteristics of where a person lives with their health outcomes to make informed recommendations for upstream changes that can improve inclusion for people living with disabilities. Area economic factors and the built environment can shape outcomes among people with SCI over time, and it’s important to include that in our surveillance.”
Botticello and others lobbied to add geographic data to the SCIMS database, starting in 2011. That information can be used to link to data from the U.S. Census Bureau and the U.S. Geological Survey to look at the economic conditions and the built environments where participants live. Subsequent research has shown that people with spinal cord injuries who live in areas with poor economic resources are disadvantaged across a range of outcomes, including quality of life measures and employment prospects.
Not surprisingly, perhaps, those who live in areas with greater economic resources tend to have better health outcomes. “Irrespective of your personal status, the characteristics of your neighborhood can impact your overall wellbeing,” Botticello says. She adds: “SCIMS has meant a lot to me careerwise. It’s a very collaborative network. It’s an epidemiologist’s dream: having a longitudinal database to work with to generate information that can be used to make tangible improvements in people’s lives.”
Heinemann agrees about its value: “It’s one of those small investments that has really paid off.”