Long-term Outcomes and Life Satisfaction of Adults with Pediatric-Onset Spinal Cord Injuries

The ultimate goal of rehabilitation for children and adolescents with SCI is to assure that they can grow up to have as productive and satisfying lives as their peers. Understanding outcomes and factors associated with these outcomes of our patients after they have become adults may help to identify interventions and rehabilitation strategies that will optimize long-term outcomes. Long-term studies of adults with pediatric-onset SCI are needed to identify important outcomes, including survival, participation, health status and health-related quality of life, and life satisfaction. These outcomes need to be compared to non-injured controls and population norms. Predictive models of important outcomes will be developed using independent factors, including demographic, impairment, functional limitation, participation, environmental and personal factors. In addition, the impact of age at injury, upper extremity reconstruction or functional electrical stimulation implants, and the Mitrofanoff procedure on adult outcomes will be assessed. The stability of selected outcomes in comparison to controls will be determined and factors associated with changes in these outcomes will be assessed. The last goal of this project will be to plan for the eventual incorporation of part of this long-term outcome study into the Shriners SCI Database.

Patients 24 years of age and older, injured before 19 years of age, who have received treatment at one of the Shriners SCI programs, have been enrolled into this study. They are being interviewed annually to identify key outcomes, including medical complications, participation, health related quality of life, and life satisfaction. In addition to demographic, impairment and functional limitation factors, environmental and personal factors and surgical interventions are included as independent variables. Community peers serve as controls, supplemented by normative data and the literature. Mortality data is assessed in order to provide the first information about death rate and cause of death of adults with pediatric-onset SCI.