Fact Sheet: Pediatric Spinal Cord Injury

A spinal cord injury (SCI) during childhood or adolescence produces sudden, dramatic changes in physical abilities that can impact virtually every area of a youth’s life. Sequelae of an SCI include loss of motor and sensory functioning, respiratory complications, neurogenic bladder and bowel (e.g., incontinence), autonomic and sexual dysfunction, as well numerous secondary acute and chronic health complications, such as pressure injuries, pain, and urinary tract infections.  

Prevalence and Course

In the United States, approximately 18,000 new cases (excluding those who die at the location) of SCI are reported each year, with an estimated 291,000 persons currently living with SCI. Approximately 20 percent of traumatic SCIs occur in individuals younger than 21 years of age, with 3 to 5 percent occurring in those younger than 15. The most common etiologies in a pediatric population include motor vehicle crashes and injury during sports/recreation activities. Other mechanisms of injury include acts of violence (primarily gunshot wounds), illness/infection, and birth injuries. In addition to the frequent complications of SCI in adulthood, children with SCI also may experience unique complications such as hypercalcemia, scoliosis, and hip dysplasia. Life expectancy is a function of neurological level and category, with longer survival in those with less severe lesions. The most common causes of death in pediatric-onset SCI are pneumonia and septicemia. Life expectancy has not improved since the 1980s.

Health and Psychosocial Consequences

During acute treatment and rehabilitation, youth with SCI are often removed from the social context of school, peers, and community activities that had previously contributed to their sense of normalcy, identity, and self-efficacy. Returning home for the first time following the injury is a major step, for both children and their caregivers, in adjusting to life after SCI. It takes time for the youth to establish a new “normal” routine. Adolescents, in particular, may experience more difficulty due to dependence on others at a time when their autonomy was increasing. Youth with SCI are at an increased risk for symptoms of depression and anxiety, identity struggles, social isolation, nonadherence, and poor health-related quality of life. Estimates of depression and anxiety are 21% and 29%, respectively. In general, however, youth are resilient and demonstrate adjustment and growth following injury.

Evidence-based Assessment

The gold standard neurological assessment for documentation of level and severity of an SCI is the International Standards for Neurological Classification of Spinal Cord Injury (ISNCSCI). It is maintained by the International Standards Committee of the American Spinal Injury Association (ASIA) and the International Spinal Cord Society (ISCoS), with the most recent revision in April 2019, and is acceptable for use in children 6 years of age and older. The National Institute on Neurological Disorders and Stroke (NINDS) of the US National Institutes of Health (NIH) published Common Data Elements (CDEs) for use in research. ISCoS developed SCI Data Sets to create a common language among SCI communities, many of which have been incorporated into the NINDS SCI CDEs and recommendations.

Culture, Diversity, Demographic and Developmental Factors

Males are more likely to sustain SCIs during adolescence than females. Violence-related SCIs are more common in males, individuals from lower socioeconomic groups, and in African-American and Hispanic youth; among whom more than 50 percent of SCIs are caused by violence.

Evidence-based Interventions

ASIA provides e-learning modules on evidence-based practice guidelines for SCI. Cognitive-behavioral therapy, including trauma focused, acceptance and commitment therapy, and coping effectiveness training are primary psychological interventions. Evidence has also demonstrated the effectiveness of peer mentoring for individuals with SCI. Within the pediatric population, it is also critical to involve family members, particularly caregivers, who are also at increased risk for mental health problems.

Authors: Kathy Zebracki, PhD
Date of last update: November 2019


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