Overview of adult outcomes in pediatric-onset spinal cord injuries: Implications for transition to adulthood

Objective: To provide an overview of the adult outcomes of individuals with pediatric-onset spinal cord injuries (SCIs) and the implications of those findings for transition to adulthood. Method: Structured interview including standardized measures. Participants: Individuals who sustained SCI at less than or equal to18 years of age and were greater than or equal to24 years of age at interview; matched community controls. Outcome Measures: A structured interview including demographics and medical complications. Standardized measures include the Functional Independence Measure, Craig Handicap Assessment and Reporting Technique (CHART), Short Form-12 (SF-12), and Satisfaction with Life Scale (SWLS). Results: Of 265 individuals interviewed (mean age at injury, 13.9 years; mean age at follow-up, 27.8 years), 67% were males, 87% were white, and 59% had tetraplegia. Results showed that 32% had a college degree, 57% were employed, 65% were living independently, and 20% were married; the median income was $12,000. Compared with controls, subjects were less likely to live independently, be married, have children, or be employed. They showed significantly less community participation, significantly lower life satisfaction, and significantly lower perceived physical health. Multiple regression analyses were conducted for 5 outcomes (independent living, employment, income, CHART total, and SWLS), using demographic factors, impairment, medical complications, use of street drugs, and functional independence as independent variables. Functional independence and education were significantly associated with all five outcomes. Illegal drug use was associated with independent living, employment, and SWLS. Race was associated with employment and CHART. Medical complications were associated with CHART and SWLS. Gender was only associated with living independently, and age at injury was only associated with SWLS. Level of injury was not associated with any of the outcomes. Conclusions: Adults with pediatric-onset SCI have adult outcomes that are below the level of their peers. These results have implications for improving the transition to adulthood for future patients with pediatric-onset SCI.