Long-term Outcomes and Life Satisfaction of Adults With Pediatric-Onset Spinal Cord Injuries
NCT ID: NCT00876837
Last Updated: 2020-08-26
Study Results
Results pending
The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.
Basic Information
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Recruitment Status
COMPLETED
Total Enrollment
514 participants
Study Classification
OBSERVATIONAL
Study Start Date
1998-03-31
Study Completion Date
2020-08-25
Brief Summary
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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.
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Detailed Description
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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.
Conditions
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Spinal Cord Injuries
Study Design
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Observational Model Type
COHORT
Study Time Perspective
PROSPECTIVE
Study Groups
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Adults with pediatric-onset SCI
No interventions assigned to this group
Eligibility Criteria
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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
* 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
* severe brain injury
Minimum Eligible Age
19 Years
Maximum Eligible Age
100 Years
Eligible Sex
ALL
Accepts Healthy Volunteers
No
Sponsors
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Shriners Hospitals for Children
OTHER
Sponsor Role
lead
Responsible Party
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Kathy Zebracki
Director of Psychology
Responsibility Role
PRINCIPAL_INVESTIGATOR
Principal Investigators
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Kathy Zebracki, Ph.D.
Role: PRINCIPAL_INVESTIGATOR
Shriners Hospitals for Children
Lawrence Vogel, M.D.
Role: PRINCIPAL_INVESTIGATOR
Shriners Hospitals for Children
Locations
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Shriners Hospitals for Children
Chicago, Illinois, United States
Site Status
Countries
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United States
References
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Deane KC, Chlan KM, Vogel LC, Zebracki K. Use of Appraisals of DisAbility Primary and Secondary Scale-Short Form (ADAPSS-sf) in individuals with pediatric-onset spinal cord injury. Spinal Cord. 2020 Mar;58(3):290-297. doi: 10.1038/s41393-019-0375-0. Epub 2019 Nov 7.
Reference Type
BACKGROUND
Anderson CJ, Vogel LC, Betz RR, Willis KM. Overview of adult outcomes in pediatric-onset spinal cord injuries: implications for transition to adulthood. J Spinal Cord Med. 2004;27 Suppl 1:S98-106. doi: 10.1080/10790268.2004.11753545.
Reference Type
RESULT
Chen Y, Anderson CJ, Vogel LC, Chlan KM, Betz RR, McDonald CM. Change in life satisfaction of adults with pediatric-onset spinal cord injury. Arch Phys Med Rehabil. 2008 Dec;89(12):2285-92. doi: 10.1016/j.apmr.2008.06.008.
Reference Type
RESULT
Anderson CJ, Vogel LC, Chlan KM, Betz RR. Coping with spinal cord injury: strategies used by adults who sustained their injuries as children or adolescents. J Spinal Cord Med. 2008;31(3):290-6. doi: 10.1080/10790268.2008.11760725.
Reference Type
RESULT
Anderson CJ, Vogel LC, Chlan KM, Betz RR, McDonald CM. Depression in adults who sustained spinal cord injuries as children or adolescents. J Spinal Cord Med. 2007;30 Suppl 1(Suppl 1):S76-82. doi: 10.1080/10790268.2007.11754609.
Reference Type
RESULT
Anderson CJ, Vogel LC, Willis KM, Betz RR. Stability of transition to adulthood among individuals with pediatric-onset spinal cord injuries. J Spinal Cord Med. 2006;29(1):46-56. doi: 10.1080/10790268.2006.11753856.
Reference Type
RESULT
Vogel LC, Krajci KA, Anderson CJ. Adults with pediatric-onset spinal cord injuries: part 3: impact of medical complications. J Spinal Cord Med. 2002 Winter;25(4):297-305. doi: 10.1080/10790268.2002.11753632.
Reference Type
RESULT
Anderson CJ, Krajci KA, Vogel LC. Life satisfaction in adults with pediatric-onset spinal cord injuries. J Spinal Cord Med. 2002 Fall;25(3):184-90. doi: 10.1080/10790268.2002.11753620.
Reference Type
RESULT
Vogel LC, Krajci KA, Anderson CJ. Adults with pediatric-onset spinal cord injury: part 2: musculoskeletal and neurological complications. J Spinal Cord Med. 2002 Summer;25(2):117-23. doi: 10.1080/10790268.2002.11753611.
Reference Type
RESULT
Vogel LC, Krajci KA, Anderson CJ. Adults with pediatric-onset spinal cord injury: part 1: prevalence of medical complications. J Spinal Cord Med. 2002 Summer;25(2):106-16. doi: 10.1080/10790268.2002.11753610.
Reference Type
RESULT
Anderson CJ, Vogel LC. Employment outcomes of adults who sustained spinal cord injuries as children or adolescents. Arch Phys Med Rehabil. 2002 Jun;83(6):791-801. doi: 10.1053/apmr.2002.32742.
Reference Type
RESULT
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
Reference Type
RESULT
Vogel LC, Chlan KM, Zebracki K, Anderson CJ. Long-term outcomes of adults with pediatric-onset spinal cord injuries as a function of neurological impairment. J Spinal Cord Med. 2011;34(1):60-6. doi: 10.1179/107902610X12883422813787.
Reference Type
RESULT
Chlan KM, Zebracki K, Vogel LC. Spirituality and life satisfaction in adults with pediatric-onset spinal cord injury. Spinal Cord. 2011 Mar;49(3):371-5. doi: 10.1038/sc.2010.80. Epub 2010 Jul 6.
Reference Type
RESULT
Hwang M, Chlan KM, Vogel LC, Zebracki K. Substance use in young adults with pediatric-onset spinal cord injury. Spinal Cord. 2012 Jul;50(7):497-501. doi: 10.1038/sc.2012.8. Epub 2012 Feb 28.
Reference Type
RESULT
Hwang M, Zebracki K, Chlan KM, Vogel LC. Longitudinal changes in medical complications in adults with pediatric-onset spinal cord injury. J Spinal Cord Med. 2014 Mar;37(2):171-8. doi: 10.1179/2045772313Y.0000000150. Epub 2013 Nov 26.
Reference Type
RESULT
January AM, Zebracki K, Chlan KM, Vogel LC. Mental health and risk of secondary medical complications in adults with pediatric-onset spinal cord injury. Top Spinal Cord Inj Rehabil. 2014 Winter;20(1):1-12. doi: 10.1310/sci2001-1.
Reference Type
RESULT
January AM, Zebracki K, Chlan KM, Vogel LC. Symptoms of depression over time in adults with pediatric-onset spinal cord injury. Arch Phys Med Rehabil. 2014 Mar;95(3):447-54. doi: 10.1016/j.apmr.2013.11.011. Epub 2013 Dec 4.
Reference Type
RESULT
Hwang M, Zebracki K, Chlan KM, Vogel LC. Longitudinal employment outcomes in adults with pediatric-onset spinal cord injury. Spinal Cord. 2014 Jun;52(6):477-82. doi: 10.1038/sc.2014.32. Epub 2014 Mar 25.
Reference Type
RESULT
Hwang M, Zebracki K, Vogel LC. Occupational characteristics of adults with pediatric-onset spinal cord injury. Top Spinal Cord Inj Rehabil. 2015 Winter;21(1):10-9. doi: 10.1310/sci2101-10.
Reference Type
RESULT
January AM, Zebracki K, Czworniak A, Chlan KM, Vogel LC. Predictive factors of hospitalization in adults with pediatric-onset SCI: a longitudinal analysis. Spinal Cord. 2015 Apr;53(4):314-9. doi: 10.1038/sc.2015.13. Epub 2015 Feb 10.
Reference Type
RESULT
Hwang M, Zebracki K, Vogel LC. Medication profile and polypharmacy in adults with pediatric-onset spinal cord injury. Spinal Cord. 2015 Sep;53(9):673-8. doi: 10.1038/sc.2015.62. Epub 2015 Apr 21.
Reference Type
RESULT
January AM, Zebracki K, Chlan KM, Vogel LC. Sleep, well-being, and psychological symptoms in adults with pediatric-onset spinal cord injury. Rehabil Psychol. 2015 Nov;60(4):328-34. doi: 10.1037/rep0000061.
Reference Type
RESULT
January AM, Zebracki K, Chlan KM, Vogel LC. Understanding post-traumatic growth following pediatric-onset spinal cord injury: the critical role of coping strategies for facilitating positive psychological outcomes. Dev Med Child Neurol. 2015 Dec;57(12):1143-9. doi: 10.1111/dmcn.12820. Epub 2015 Jun 11.
Reference Type
RESULT
Murray CB, Zebracki K, Chlan KM, Moss AC, Vogel LC. Medical and psychological factors related to pain in adults with pediatric-onset spinal cord injury: a biopsychosocial model. Spinal Cord. 2017 Apr;55(4):405-410. doi: 10.1038/sc.2016.137. Epub 2016 Sep 27.
Reference Type
RESULT
Hwang M, Zebracki K, Vogel LC. Long-Term Outcomes and Longitudinal Changes of Neurogenic Bowel Management in Adults With Pediatric-Onset Spinal Cord Injury. Arch Phys Med Rehabil. 2017 Feb;98(2):241-248. doi: 10.1016/j.apmr.2016.07.004. Epub 2016 Jul 26.
Reference Type
RESULT
January AM, Zebracki K, Chlan KM, Vogel LC. Poor sleep in adults with pediatric-onset spinal cord injury: associations with pain, health, and activity. J Spinal Cord Med. 2017 Sep;40(5):560-566. doi: 10.1080/10790268.2017.1308109. Epub 2017 Apr 10.
Reference Type
RESULT
January AM, Kirk S, Zebracki K, Chlan KM, Vogel LC. Psychosocial and Health Outcomes of Adults With Violently Acquired Pediatric Spinal Cord Injury. Top Spinal Cord Inj Rehabil. 2018 Fall;24(4):363-370. doi: 10.1310/sci17-00012. Epub 2018 Feb 12.
Reference Type
RESULT
Other Identifiers
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SHC-SCI-LT
Identifier Type: -
Identifier Source: org_study_id
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