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

This study is currently recruiting participants. (see Contacts and Locations)
Verified November 2016 by Shriners Hospitals for Children
Information provided by (Responsible Party):
Kathy Zebracki, Shriners Hospitals for Children Identifier:
First received: April 3, 2009
Last updated: November 1, 2016
Last verified: November 2016
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.

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

Resource links provided by NLM:

Further study details as provided by Shriners Hospitals for Children:

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

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

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

Estimated Enrollment: 600
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)
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.

Ages Eligible for Study:   19 Years to 100 Years   (Adult, Senior)
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
  Contacts and Locations
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, see Learn About Clinical Studies.

Please refer to this study by its identifier: NCT00876837

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

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
Principal Investigator: Kathy Zebracki, Ph.D. Shriners Hospitals for Children
Principal Investigator: Lawrence Vogel, M.D. Shriners Hospitals for Children
  More Information

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

Responsible Party: Kathy Zebracki, Director of Psychology, Shriners Hospitals for Children Identifier: NCT00876837     History of Changes
Other Study ID Numbers: SHC-SCI-LT
Study First Received: April 3, 2009
Last Updated: November 1, 2016

Additional relevant MeSH terms:
Wounds and Injuries
Spinal Cord Injuries
Spinal Cord Diseases
Central Nervous System Diseases
Nervous System Diseases
Trauma, Nervous System processed this record on May 25, 2017