The Long View of Living with Spinal Cord Injury

Did you know NIDILRR has funded one of the longest-running studies of the effects of spinal cord injury (SCI) and aging, following the same individuals for more than 45 years? The current project, Aging and Spinal Cord Injury: A 45-Year Longitudinal Study under James Krause, PhD, is the latest iteration of a series of NIDILRR-funded projects funded since 1992 to study data collected from more than 2200 people with SCI. The history of this project goes back to 1973, when Nancy Crewe, PhD, began surveying and interviewing people with SCI to learn about their lives, how they managed their personal relationships and marriages, how they found and maintained work, and what activities were meaningful to them. In subsequent years, some of the people who participated in those first surveys and interviews, as well as newer participants, have completed the Life Situation Questionnaire, an extensive questionnaire which asks about activities, education, employment, environment and social supports, attendant care, medical history, pain, sleep, secondary conditions like pressure injuries, lifestyle, and much more. These surveys are sent to participants about every five years. For the current study, the ninth data collection is focusing on 768 participants, 50 of whom were part of that first study and 54 of whom were added in 1984.

What can we do with this rich pool of data on how aging and SCI interact? This data gives researchers like Dr. Krause a long view of life with SCI. Researchers use the data to identify the natural course of health and participation for people living with SCI, with the goal of understanding the challenges they face as they age and the best ways to support them. In a 2017 article for the journal Spinal Cord, Krause et al reported on participants from that original study in 1973, 49 of whom completed all five assessments between 1973 and 2014. They found that participants stayed relatively well-adjusted and satisfied with their employment, finances, and living arrangements over time. Many participants continued to work.  The participants experienced higher need for physician visits and more hospitalizations over time, particularly, as well as declines in satisfaction with their sex life, social life, and health, all of which may be attributed to age.

This kind of data would not be available were it not for Dr. Crewe’s initial study, her long-term focus, and the continued dedication of the team at the Medical University of South Carolina (MUSC) who have been stewards of this project for more than 15 years. At the time of the original study’s launch, living 40 years with an SCI was unthinkable. When MUSC held a celebration of 40 years of research for the study in 2015, the people with SCI in attendance averaged 41.8 years post-injury. Only a handful of participants were less than 30 years post-injury and 10 were actually 50 years or more post injury!

We have much to learn about aging with spinal cord injury, thanks to Dr. Crewe who passed away in 2011, and to the continuing efforts of Dr. Krause and his team at MUSC. When she was interviewed about the study in 2002, Dr. Crewe said she was impressed by the resilience of the people she’d surveyed, that they had a deep self-understanding and managed to put together good lives for themselves. She saw how our knowledge about life with a disability had evolved and believed that future generations of people with severe injuries will benefit. We look forward to many more insights in the coming years.

Visit the Longevity After Injury Project to learn more about what Dr. Krause and his team are currently working on.

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