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

Shriners Hospitals for Children

Status: Completed

Conditions: Spinal Cord Injuries

Study type: Observational

Funder types: Other

Identifiers

NCT00876837

SHC-SCI-LT

Details and patient eligibility

About

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.

Full 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.

Enrollment: 514 patients

Sex: All

Ages: 19 to 100 years old

Volunteers: No Healthy Volunteers

Inclusion criteria

• Individuals who are 19 years of age and older
• Were injured at the age of 18 years or younger
• Received care at Shriners Hospitals for Children in Chicago, Philadelphia, or Northern California

Exclusion criteria

• Non-English speaking individuals due to lack of measures in languages other than English and lack of foreign-speaking research assistants
• severe brain injury

Trial design

514 participants in 1 patient group

Adults with pediatric-onset SCI