Long-Term Survivorship May Reduce Psychosocial Challenges for Adults Aging with Traumatic Spinal Cord Injury

A study funded by the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR).

A spinal cord injury (SCI) is damage anywhere along the spinal cord from trauma. An SCI can occur in the upper part of the spine (a cervical injury) or in the lower part of the spine (a non-cervical injury), with cervical injuries usually having more severe impacts on mobility. People who experience traumatic SCI can face a lifetime of significant health challenges. Prior research has suggested that people with SCI who experience more secondary health conditions, such as pressure injuries, urinary tract infections, and pain may lead to early death. Research has also suggested that individuals with SCI may face significant social challenges (e.g. unemployment, environmental barriers) and difficulties with emotional distress (e.g. symptoms of major depression). However, many people with SCI survive to advanced age despite the potential ongoing physical, social, and psychological challenges they may face as they age. In a recent NIDILRR-funded study, researchers sought to examine the physical health and psychosocial challenges in aging adults with a longstanding history of SCI. Specifically, the researchers sought to evaluate how those physical and psychosocial challenges changed over time and what individual characteristics had an impact on successful aging.

Researchers from the project Aging and Spinal Cord Injury: A 45-Year Longitudinal Study reviewed data from 1,997 individuals who participated in the SCI Longitudinal Aging Study between 1993 and 2018. The study was launched in 1973, with subsequent groups added in 1984, 1993 (2 groups), and 2003. Participants in the study were 18 years or older, with a traumatic SCI, and all joined the study when they were at least one year past their injury. The participants completed the Life Situation Questionnaire every five years to capture their medical, psychosocial, and vocational information. The participants answered questions about their demographics and about their injury such as severity, age at injury, the amount of time since the SCI, and the severity of the SCI. Injury severities were separated into four categories based on where on the spine the injury occurred and functional level: Cervical 1 - 4 (C1-C4), nonambulatory (unable to walk); C5-C8, nonambulatory; noncervical, nonambulatory; and ambulatory (able to walk), regardless of level. The participants also rated the difficulty of their situations involving health, emotional distress, social isolation, environmental barriers, money, and lack of opportunities, from 1 (no problem) to 5 (major problem).

Of the 1,997 participants, the majority were white/non-Hispanic males with an average age of about 45 years. The average age at onset of injury was about 30 years old, and the average time since injury onset was about 13 years. For injury severity, about a third of the participants were noncervical, nonambulatory. Another third were C5-C8, nonambulatory. About a quarter of participants were ambulatory, regardless of level. Finally, just over 10% of participants were C1-C4, nonambulatory.

Regarding the self-reported problem factors, the researchers found the following:

• Health problems increased as the number of years post-injury increased for all participants.
• Increased number of years post-injury was associated with a decrease in emotional distress, social isolation, environmental barriers, and problems with money and lack of opportunities.
• Participants with higher levels of education had fewer problems with health, social isolation, emotional distress, money, and lack of opportunities.
• Hispanic and non-Hispanic/Black participants were more likely to have challenges with environmental barriers, money, and lack of opportunities.

While the finding that aging can bring increasing problems in physical health is not unexpected, the authors noted that many of the results of this study may challenge some of the assumptions about the expected long-term psychosocial outcomes for people with SCI as they age. Specifically, they may challenge the notion that people with SCI are more than likely to decline in all aspects of life as they get older. The authors acknowledge that decline in physical health status appears to still be a major concern for people with SCI as they age. However, the study’s results may provide greater understanding of the role that the number of years post-injury plays in the long-term resilience of people with SCI. The authors also suggested that the apparent increase in resilience over time may be independent of declines in physical health status. They may relate to changes in policy or environment that lead to better access to healthcare and more opportunities for employment and financial stability. Future research may identify what individual characteristics or changes in the environment help in building resilience to respond to the challenges of aging with SCI.

To Learn More

The SCI Longitudinal Study is now in its 50th year collecting data to understand the lifetime impact of SCI. Read more about this study and try out the Life Expectancy Calculator, one of four calculators that use study data to predict health outcomes for people with SCI.

The Model Systems Knowledge Translation Center offers a large collection of information products developed by researchers to help people with SCI understand their injury, manage their health and wellness, and engage in employment and community participation.

To Learn More About this Study

Li, C., Clark, J.M.R., and Krause, J.S. (2021) Twenty-five-year cross-sequential analysis of self-reported problems: Findings from 5 cohorts from the spinal cord injury longitudinal aging study. Archives of Physical Medicine and Rehabilitation, 102, 888-894. This article is available from the NARIC collection under Accession Number J86438.