Spinal Cord Injuries
Conditions
Brief summary
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.
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.
Interventions
None listed
Sponsors
Shriners Hospitals for Children
Study design
Observational model
COHORT
Time perspective
PROSPECTIVE
Eligibility
Sex/Gender
ALL
Age
19 Years to 100 Years
Healthy volunteers
No
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
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| medical complications | annually | Assessment of medical complications, including pressure ulcers, spasticity, UTIs, hospitalizations |
Secondary
| Measure | Time frame | Description |
|---|---|---|
| psychological outcomes | annually | assessment of current psychological functioning, including depression, anxiety, happiness, and life satisfaction |
Other
| Measure | Time frame | Description |
|---|---|---|
| social outcomes | annually | assessment of social outcomes, including marriage, children, education level, employment status. |
Countries
United States
Outcome results
None listed