Long-term Outcomes and Life Satisfaction of Adults With Pediatric-Onset Spinal Cord Injuries
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Purpose
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.
| Condition |
|---|
|
Spinal Cord Injuries |
| Study Type: | Observational |
| Study Design: | Observational Model: Cohort Time Perspective: Prospective |
| Official Title: | Long-term Outcomes and Life Satisfaction of Adults With Pediatric-Onset Spinal Cord Injuries |
| Estimated Enrollment: | 500 |
| Study Start Date: | March 1998 |
| Estimated Study Completion Date: | March 2018 |
| Estimated Primary Completion Date: | March 2018 (Final data collection date for primary outcome measure) |
| Groups/Cohorts |
|---|
| Adults with pediatric-onset SCI |
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.
Eligibility| Ages Eligible for Study: | 18 Years and older |
| Genders Eligible for Study: | Both |
| Accepts Healthy Volunteers: | No |
| Sampling Method: | Non-Probability Sample |
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 18 years of age and older and who were injured at age 18 years or younger.
Inclusion Criteria:
- Individuals who are 18 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
Contacts and Locations| Contact: Kathy Zebracki, Ph.D. | 773-385-5832 | kzebracki@shrinenet.org |
| Contact: Lawrence Vogel, M.D. | 773-385-5528 | lvogel@shrinenet.org |
| United States, Illinois | |
| Shriners Hospitals for Children | Recruiting |
| Chicago, Illinois, United States, 60707 | |
| Principal Investigator: Kathy Zebracki, Ph.D. | |
| Principal Investigator: Lawrence Vogel, M.D. | |
| Principal Investigator: | Kathy Zebracki, Ph.D. | Shriners Hospitals for Children - Chicago |
| Principal Investigator: | Lawrence Vogel, M.D. | Shriners Hospitals for Children - Chicago |
More Information
Publications:
| Responsible Party: | Kathy Zebracki, Assistant Professor/ Clinical Psychologist, Shriners Hospitals for Children |
| ClinicalTrials.gov Identifier: | NCT00876837 History of Changes |
| Other Study ID Numbers: | SHC-SCI-LT |
| Study First Received: | April 3, 2009 |
| Last Updated: | April 30, 2012 |
| Health Authority: | United States: Institutional Review Board |
Additional relevant MeSH terms:
|
Spinal Cord Injuries Spinal Cord Diseases Central Nervous System Diseases |
Nervous System Diseases Trauma, Nervous System Wounds and Injuries |
ClinicalTrials.gov processed this record on May 19, 2013