Demographic and Health Profiles of People Living With Traumatic Spinal Cord Injury in the United States During 2015-2019: Findings from the Spinal Cord Injury Model Systems Database

Objective: To estimate the population profile of people living with traumatic spinal cord injury (TSCI) to help evaluate health care needs of this aging population.

Design: Cross-sectional study.

Setting: SCI Model Systems (SCIMS) centers in the United States.

Participants: Individuals (N=20,437) who: (1) incurred a TSCI between 1972 and 2019, (2) were initially treated at one of the SCIMS centers, and (3) were alive during the period from 2015 to 2019.

Interventions: Not applicable.

Main outcome measures: Demographics, injury characteristics, health conditions, and social participation, as compared with previous estimates in 2008 and general population statistics in 2017.

Results: People living with TSCI during the period from 2015-2019 (mean years since injury, 18y; 79.4% male, and 62.5% White) were older (51.6 vs 45.0y) and had a higher percentage of C1-C4 (21.9% vs 17.0%) and American Spinal Injury Association Impairment Scale D injuries (31.5% vs 26.0%) compared with the 2008 TSCI population profile. Although the proportion of people with a bachelor's degree or higher was similar between the TSCI and general US populations (30.7% vs 32.0%), the employment rate was lower in the TSCI population (24.0% vs 59.5%). People are affected by various medical problems over time post TSCI. The prevalence of pain and urinary tract infection remained high over postinjury years, at 86.1% and 52.6%, respectively. Rehospitalization and depression were most common during the first year (34.9% and 22.3%, respectively), and pressure injury was more common among those 20 years or more postinjury (>30.0%). Health conditions declined with advanced age, including self-perceived health, diabetes, and institutional residence. People who survived TSCI for years, however, had relatively good degrees of independence and social participation.

Conclusion: Study findings highlight the need for greater involvement of primary care providers and geriatricians in the continuity of care for SCI to promote healthy aging. Improvement in employment should also be the target in promoting social participation and quality of life.