US Estimates of Pediatric Spinal Cord Injury: Implications for Clinical Care and Research Planning

The aim of this study was to provide accurate estimates and characterizations of children with spinal cord injuries (SCIs) and for the subset that are appropriate for inclusion in clinical trials. We identified children <18 years of age with SCI International Classifications of Diseases, Ninth Revision, Clinical Modification Codes (ICD-9-CM codes) from the 2006, 2009, and 2012 Kids' Inpatient Database. We excluded those with late effects, transfers to other hospitals, unspecified injury levels, and hospital stays <48h. We then used conventional rationale to identify children who were eligible for SCI clinical trials. Over 3 years, 2484 children had SCI ICD-9-CM codes; 1342 had coding consistent with true SCI and 706 satisfied clinical trial inclusion criteria, yielding national estimates of 2013 and 1062, respectively. Of children with clinical trial eligible SCI, injuries were more common in the cervical region (66.1%), males (65.5%), older children (51.1% were 16-17 years old), and the South (49.8%). The majority were treated at urban teaching hospitals (84.6%); however, only 20.3% were treated at pediatric-specific centers. Of the 445 sample hospitals treating children with SCI, 66.3% treated just 1 child in the 3-year period. Children eligible for SCI clinical trials represented less than one third of children with SCI ICD-9-CM codes. These children were regionally localized to the South, with few receiving treatment at pediatric-specific centers or centers that frequently care for children with SCI. These findings highlight the importance of carefully assessing the national distribution of children with SCI, so that resources are appropriately allocated to optimize clinical care and research outcomes.