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

Spinal Cord Injuries Clinical Trial

Official title:

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

Clinical Trial Details — Status: Completed

Administrative data

• NCT number: NCT00876837
• Other study ID #: SHC-SCI-LT
• Status: Completed
• Start date: March 1998
• Est. completion date: August 25, 2020

Study information

• Verified date: August 2020
• Source: Shriners Hospitals for Children
• Contact: n/a
• Is FDA regulated: No
• Study type: Observational

Clinical Trial 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.

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.

Recruitment information / eligibility

• Status: Completed
• Enrollment: 514
• Est. completion date: August 25, 2020
• Est. primary completion date: August 25, 2020
• Accepts healthy volunteers: No
• Gender: All
• Age group: 19 Years to 100 Years

Eligibility

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

Related Conditions & MeSH terms

• Spinal Cord Injuries
• Wounds and Injuries

Locations

Country	Name	City	State
United States	Shriners Hospitals for Children	Chicago	Illinois

Sponsors (1)

Lead Sponsor	Collaborator
Shriners Hospitals for Children

Country where clinical trial is conducted

United States, 

References & Publications (28)

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. — View Citation

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. — View Citation

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:S76-82. — View Citation

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. — View Citation

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. — View Citation

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. — View Citation

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. — View Citation

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. — View Citation

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. — View Citation

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. — View Citation

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. — View Citation

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. — View Citation

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. — View Citation

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. — View Citation

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. — View Citation

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. — View Citation

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. — View Citation

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. — View Citation

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. — View Citation

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. — View Citation

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):11 — View Citation

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. — View Citation

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 — View Citation

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. — View Citation

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. — View Citation

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. — View Citation

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. — View Citation

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: 10.13

* Note: There are 28 references in all — Click here to view all references

Outcome

Type	Measure	Description	Time frame	Safety issue
Other	social outcomes	assessment of social outcomes, including marriage, children, education level, employment status.	annually
Primary	medical complications	Assessment of medical complications, including pressure ulcers, spasticity, UTIs, hospitalizations	annually
Secondary	psychological outcomes	assessment of current psychological functioning, including depression, anxiety, happiness, and life satisfaction	annually