NCT00876837

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.

Trial Health

87
On Track

Trial Health Score

Automated assessment based on enrollment pace, timeline, and geographic reach

Enrollment
514

participants targeted

Target at P75+ for all trials

Timeline
Completed

Started Mar 1998

Longer than P75 for all trials

Geographic Reach
1 country

1 active site

Status
completed

Health score is calculated from publicly available data and should be used for screening purposes only.

Trial Relationships

Click on a node to explore related trials.

Study Timeline

Key milestones and dates

Study Start

First participant enrolled

March 1, 1998

Completed
11.1 years until next milestone

First Submitted

Initial submission to the registry

April 3, 2009

Completed
4 days until next milestone

First Posted

Study publicly available on registry

April 7, 2009

Completed
11.4 years until next milestone

Primary Completion

Last participant's last visit for primary outcome

August 25, 2020

Completed
Same day until next milestone

Study Completion

Last participant's last visit for all outcomes

August 25, 2020

Completed
Last Updated

August 26, 2020

Status Verified

August 1, 2020

Enrollment Period

22.5 years

First QC Date

April 3, 2009

Last Update Submit

August 25, 2020

Conditions

Spinal Cord Injuries

Outcome Measures

Primary Outcomes (1)

  • medical complications

    Assessment of medical complications, including pressure ulcers, spasticity, UTIs, hospitalizations

    annually

Secondary Outcomes (1)

  • psychological outcomes

    annually

Other Outcomes (1)

  • social outcomes

    annually

Study Arms (1)

Adults with pediatric-onset SCI

Eligibility Criteria

Age19 Years - 100 Years
Sexall
Healthy VolunteersNo
Age GroupsAdult (18-64), Older Adult (65+)
Sampling MethodNon-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.

You may qualify if:

  • 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

You may not qualify if:

  • Non-English speaking individuals due to lack of measures in languages other than English and lack of foreign-speaking research assistants
  • severe brain injury

Contact the study team to confirm eligibility.

Sponsors & Collaborators

Study Sites (1)

Shriners Hospitals for Children

Chicago, Illinois, 60707, United States

Location

Related Publications (28)

  • 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.

    PMID: 31700146BACKGROUND

  • 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.

    PMID: 15503711RESULT

  • 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.

    PMID: 19061740RESULT

  • 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.

    PMID: 18795479RESULT

  • 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.

    PMID: 17874691RESULT

  • 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.

    PMID: 16572565RESULT

  • 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.

    PMID: 12482173RESULT

  • 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.

    PMID: 12214905RESULT

  • 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.

    PMID: 12137215RESULT

  • 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.

    PMID: 12137214RESULT

  • 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.

    PMID: 12048657RESULT

  • 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

    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.

    PMID: 21528628RESULT

  • 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.

    PMID: 20603633RESULT

  • 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.

    PMID: 22370762RESULT

  • 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.

    PMID: 24090490RESULT

  • 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.

    PMID: 24574817RESULT

  • 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.

    PMID: 24316327RESULT

  • 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.

    PMID: 24663002RESULT

  • 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.

    PMID: 25762856RESULT

  • 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.

    PMID: 25665547RESULT

  • 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.

    PMID: 25896344RESULT

  • 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.

    PMID: 26618213RESULT

  • 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.

    PMID: 26095798RESULT

  • 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.

    PMID: 27670804RESULT

  • 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.

    PMID: 27473299RESULT

  • 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.

    PMID: 28394218RESULT

  • 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.

    PMID: 30459499RESULT

MeSH Terms

Conditions

Spinal Cord Injuries

Condition Hierarchy (Ancestors)

Spinal Cord DiseasesCentral Nervous System DiseasesNervous System DiseasesTrauma, Nervous SystemWounds and Injuries

Study Officials

  • Kathy Zebracki, Ph.D.

    Shriners Hospitals for Children

    PRINCIPAL INVESTIGATOR

  • Lawrence Vogel, M.D.

    Shriners Hospitals for Children

    PRINCIPAL INVESTIGATOR

Study Design

Study Type
observational
Observational Model
COHORT
Time Perspective
PROSPECTIVE
Sponsor Type
OTHER
Responsible Party
PRINCIPAL INVESTIGATOR
PI Title
Director of Psychology

Study Record Dates

First Submitted

April 3, 2009

First Posted

April 7, 2009

Study Start

March 1, 1998

Primary Completion

August 25, 2020

Study Completion

August 25, 2020

Last Updated

August 26, 2020

Record last verified: 2020-08

Locations

US(1)