The purpose of this study is to assess life satisfaction and long-term outcomes (i.e., medical and psychosocial) of adults who sustained spinal cord injuries (SCI) as children or adolescents.

Population

The subjects for this study are adults who have received care in the SCI Programs of the Shriners Hospitals in Chicago, Philadelphia, or Northern California, who are 19 years of age and older and who were injured at age 18 years or younger.

Brief Title

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

Official Title

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

Brief Summary

The purpose of this study is to assess life satisfaction and long-term outcomes (i.e.,<br /> medical and psychosocial) of adults who sustained spinal cord injuries (SCI) as children or<br /> adolescents.

Detailed Description

The ultimate goal of rehabilitation for children and adolescents with spinal cord injuries
(SCIs) is to assure that they can grow up to have as productive and satisfying lives as their
peers. Understanding 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. Further, these outcomes need to be
compared to population norms. Predictive models of important outcomes will be developed using
independent factors, including demographic, impairment, functional limitation, participation,
and 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 normative and census data will be determined and factors associated with
changes in these outcomes will be assessed.

Outcome Measures

Outcome measures are the tests that investigators perform to prove whether or not a treatment being tested in a clinical trial is having any effect.