Stability of transition to adulthood among individuals with pediatric-onset spinal cord injuries.

BACKGROUND/OBJECTIVE: Cross-sectional studies have provided information about the outcomes of adults with pediatric-onset spinal cord injuries (SCIs), but there has been no information about the stability of those outcomes over time. The purpose of this study was to assess the stability of independent living, employment, and life satisfaction and to determine factors associated with stable, successful outcomes. METHODS: Structured interviews of individuals who had sustained an SCI at age 18 years or younger and were 24 years or older at first interview. The primary standardized measures used include the Functional Independence Measure, Craig Handicap Assessment and Recording Technique (CHART), Short-Form 12 measure of perceived health, and the Satisfaction with Life Scale. RESULTS: One hundred sixty-six individuals had 3 consecutive annual interviews. Mean age at interview was 29 years (range, 24-36 years). Of this group, 64% lived independently at the first interview, and 90% of those continued to live independently; 64% were employed at first interview, of which 83% continued to be employed; and 48% reported life satisfaction at the first interview, and 84% of these continued to be satisfied. Factors most closely associated with stable independent living were CHART subscales of physical independence, mobility, and occupation. Factors associated with stable employment were sex, race, independent living, CHART mobility, and cognitive independence. Factors associated with stable life satisfaction were CHART occupation subscale and fewer pressure ulcers. CONCLUSIONS: Many individuals with pediatric-onset SCI achieve successful, stable adult outcomes. The factors associated with that success can help us improve rehabilitation for future patients.

Prevalence and etiology of autonomic dysreflexia in children with spinal cord injuries.

OBJECTIVE: To delineate the prevalence, etiologies, clinical manifestations, complications, and management of autonomic dysreflexia in individuals who sustained spinal cord injury (SCI) as children. METHOD: Retrospective chart review. PARTICIPANTS: All individuals with > or = T6 SCI who were injured at 13 years of age or younger and who were cared for at one pediatric SCI program. OUTCOME MEASURES: Outcome measures included prevalence, etiologic factors, and symptoms of autonomic dysreflexia as documented in both inpatient and outpatient records. Blood pressure and heart rate for observed episodes of autonomic dysreflexia also were recorded. RESULTS: Of 121 participants who met the study criteria, 62 (51%) had experienced autonomic dysreflexia. The most common causes of dysreflexia were urologic (75%) and bowel impaction (18%), and the distribution of causative factors were similar in the 3 age ranges (0-5 years, 6-13 years, and 14-21 years). For all age groups, the most common symptoms were facial flushing (43%), headaches (24%), sweating (15%), and piloerection (14%). However, headaches (5%) and piloerection (0%), were uncommonly seen in children 5 years of age and younger. For observed episodes of autonomic dysreflexia, the majority (93%) demonstrated blood pressure elevations consistent with published guidelines, 50% experienced tachycardia, and 12.5% experienced bradycardia. Autonomic dysreflexia was significantly more common in individuals with complete lesions and in those who were injured between 6 and 13 years old compared with those injured at a younger age. Individuals with cervical injuries were not at significantly higher risk of dysreflexia than were those with upper thoracic level injuries. However, among individuals with complete lesions, autonomic dysreflexia was significantly more common in those with tetraplegia. CONCLUSION: Autonomic dysreflexia has a similar prevalence in pediatric-onset SCI compared with the adult SCI population. Dysreflexia is diagnosed less commonly in infants and preschool-aged children, and these 2 populations may present with more subtle signs and symptoms.

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 < or = 18 years of age and were > or = 24 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 dollars. 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.