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

The safety and scientific validity of this study is the responsibility of the study sponsor and investigators. Listing a study does not mean it has been evaluated by the U.S. Federal Government. Know the risks and potential benefits of clinical studies and talk to your health care provider before participating. Read our disclaimer for details. Identifier: NCT00876837
Recruitment Status : Recruiting
First Posted : April 7, 2009
Last Update Posted : March 24, 2020
Information provided by (Responsible Party):
Kathy Zebracki, Shriners Hospitals for Children

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.

Condition or disease
Spinal Cord Injuries

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.

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Study Type : Observational
Estimated Enrollment : 600 participants
Observational Model: Cohort
Time Perspective: Prospective
Official Title: Long-term Outcomes and Life Satisfaction of Adults With Pediatric-Onset Spinal Cord Injuries
Study Start Date : March 1998
Estimated Primary Completion Date : March 2025
Estimated Study Completion Date : March 2025

Resource links provided by the National Library of Medicine

Adults with pediatric-onset SCI

Primary Outcome Measures :
  1. medical complications [ Time Frame: annually ]
    Assessment of medical complications, including pressure ulcers, spasticity, UTIs, hospitalizations

Secondary Outcome Measures :
  1. psychological outcomes [ Time Frame: annually ]
    assessment of current psychological functioning, including depression, anxiety, happiness, and life satisfaction

Other Outcome Measures:
  1. social outcomes [ Time Frame: annually ]
    assessment of social outcomes, including marriage, children, education level, employment status.

Information from the National Library of Medicine

Choosing to participate in a study is an important personal decision. Talk with your doctor and family members or friends about deciding to join a study. To learn more about this study, you or your doctor may contact the study research staff using the contacts provided below. For general information, Learn About Clinical Studies.

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Ages Eligible for Study:   19 Years to 100 Years   (Adult, Older Adult)
Sexes Eligible for Study:   All
Accepts Healthy Volunteers:   No
Sampling Method:   Non-Probability Sample
Study 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.

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

Information from the National Library of Medicine

To learn more about this study, you or your doctor may contact the study research staff using the contact information provided by the sponsor.

Please refer to this study by its identifier (NCT number): NCT00876837

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Contact: Kathy Zebracki, Ph.D. 773-385-5832
Contact: Lawrence Vogel, M.D. 773-385-5528

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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.         
Sponsors and Collaborators
Shriners Hospitals for Children
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Principal Investigator: Kathy Zebracki, Ph.D. Shriners Hospitals for Children
Principal Investigator: Lawrence Vogel, M.D. Shriners Hospitals for Children
Publications of Results:
Zebracki, K., Anderson, C., Chlan, K., & Vogel, L. (2010). Outcomes of adults with pediatric-onset spinal cord injury: Longitudinal findings and implications on transition to adulthood. Topics in Spinal Cord Injury Rehabilitation, 16(1), 17-25. Doi: 10.1310/sci1601-17

Other Publications:
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Responsible Party: Kathy Zebracki, Director of Psychology, Shriners Hospitals for Children Identifier: NCT00876837    
Other Study ID Numbers: SHC-SCI-LT
First Posted: April 7, 2009    Key Record Dates
Last Update Posted: March 24, 2020
Last Verified: March 2020
Additional relevant MeSH terms:
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Spinal Cord Injuries
Wounds and Injuries
Spinal Cord Diseases
Central Nervous System Diseases
Nervous System Diseases
Trauma, Nervous System