Long-term Outcomes and Life Satisfaction of Adults With Pediatric-Onset Spinal Cord Injuries
| Status: | Recruiting |
|---|---|
| Conditions: | Hospital, Orthopedic |
| Therapuetic Areas: | Orthopedics / Podiatry, Other |
| Healthy: | No |
| Age Range: | 19 - 100 |
| Updated: | 7/22/2018 |
| Start Date: | March 1998 |
| End Date: | March 2025 |
| Contact: | Kathy Zebracki, Ph.D. |
| Email: | kzebracki@shrinenet.org |
| Phone: | 773-385-5832 |
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.
medical and psychosocial) of adults who sustained spinal cord injuries (SCI) as children or
adolescents.
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.
(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.
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
We found this trial at
1
site
Chicago, Illinois 60707
Principal Investigator: Kathy Zebracki, Ph.D.
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