Paediatric Spinal Cord Injury and Long-term Social Outcomes.

NCT05421260 | Unknown

• 1 other identifier: RL1 815
• Study Type: observational
• Target: 100
• Locations: 0 countries
• Sites: N/A

Brief Summary

To provide the overall quality of life (QOL), activity and participation values for adults with paediatric onset spinal cord injury (SCI), stratified by injury level, neurological status and compare it with matched controls with adults with adult-onset SCI.

Conditions

Spinal Cord Injuries

Outcome Measures

Primary Outcomes (2)

• To compare long term quality of life between paediatric and adult-onset SCI patients.

  By interviewing the participant, using a validated questionnaire from the International SCI data set, the Quality of Life basic data set, version 1.0, the long term quality of life can be assessed.

  This interview (a combination of these validated questionnaires) will take place within 30 days of seeking consent from the participant. Once the interview has taken place, the participant has completed the research study.

• To compare long term social activity and social participation between paediatric and adult-onset SCI patients.

  By interviewing the participant, using a validated questionnaire from the International SCI data set, Activities and participation basic data set, Version 1.0, August 2012, the social activity and social participation can be assessed.

  This interview (a combination of these validated questionnaires) will take place within 30 days of seeking consent from the participant. Once the interview has taken place, the participant has completed the research study.

Study Arms (2)

Adult onset SCI

Spinal cord injury accident when the patient is over the age of 18 years old.

Paediatric onset SCI

Spinal cord injury accident when the patient is under the age of 18 years old.

Eligibility Criteria

• Age: 18 Years - 60 Years
• Sex: all
• Healthy Volunteers: No
• Age Groups: Adult (18-64)
• Sampling Method: Non-Probability Sample

Study Population

Adult and paediatric onset SCI patients who have had their SCI for over 5 years.

You may qualify if:

• Age 18- 60 years
• SCI for over 5 years duration

You may not qualify if:

• Patients unable to speak and understand English
• Patients not able to speak on phone
• Patients with intellectual disability affecting their ability to speak without aids.
• Cauda equina syndrome

Sponsors & Collaborators

• Robert Jones and Agnes Hunt Orthopaedic and District NHS Trust: lead

Related Publications (9)

• Vogel LC, Betz RR, Mulcahey MJ. Spinal cord injuries in children and adolescents. Handb Clin Neurol. 2012;109:131-48. doi: 10.1016/B978-0-444-52137-8.00008-5.

  PMID: 23098710 BACKGROUND

• Parent S, Mac-Thiong JM, Roy-Beaudry M, Sosa JF, Labelle H. Spinal cord injury in the pediatric population: a systematic review of the literature. J Neurotrauma. 2011 Aug;28(8):1515-24. doi: 10.1089/neu.2009.1153. Epub 2011 Jun 9.

  PMID: 21501096 BACKGROUND

• Vogel L, Mulcahy MJ, Betz RR. The child with a spinal cord injury. Dev Med Child Neurol. 1997 Mar;39(3):202-7. doi: 10.1111/j.1469-8749.1997.tb07411.x. No abstract available.

  PMID: 9112971 BACKGROUND

• Vogel LC, Klaas SJ, Lubicky JP, Anderson CJ. Long-term outcomes and life satisfaction of adults who had pediatric spinal cord injuries. Arch Phys Med Rehabil. 1998 Dec;79(12):1496-503. doi: 10.1016/s0003-9993(98)90409-9.

  PMID: 9862289 BACKGROUND

• Kulshrestha R, Kumar N, Chowdhury JR, Osman A, El Masri W. Long-term outcome of paediatric spinal cord injury. Trauma, 2017, 19,1_suppl: 75-82.

  BACKGROUND

• Post MW, van Leeuwen CM. Psychosocial issues in spinal cord injury: a review. Spinal Cord. 2012 May;50(5):382-9. doi: 10.1038/sc.2011.182. Epub 2012 Jan 24.

  PMID: 22270190 BACKGROUND

• Barclay L, Lentin P, Bourke-Taylor H, McDonald R. The experiences of social and community participation of people with non-traumatic spinal cord injury. Aust Occup Ther J. 2019 Feb;66(1):61-67. doi: 10.1111/1440-1630.12522. Epub 2018 Aug 29.

  PMID: 30156293 BACKGROUND

• Barclay L, Callaway L, McDonald R, Farnworth L, Brown T, Broom L. Time Use following Spinal Cord Injury: An Examination of the Literature. British Journal of Occupational Therapy. 2011; 74 (12): 573-580

  BACKGROUND

• Biering-Sorensen F, Charlifue S, DeVivo M, Noonan V, Post M, Stripling T, Wing P. International Spinal Cord Injury Data Sets. Spinal Cord. 2006 Sep;44(9):530-4. doi: 10.1038/sj.sc.3101930.

  PMID: 16955072 BACKGROUND

MeSH Terms

Conditions

Spinal Cord Injuries

Condition Hierarchy (Ancestors)

Spinal Cord Diseases; Central Nervous System Diseases; Nervous System Diseases; Trauma, Nervous System; Wounds and Injuries

Central Study Contacts

Charlotte Perkins

CONTACT

01691 404142; charlotteperkins1@nhs.net

Julie Steen, BSc (Hons)

CONTACT

01691 404210; julie.steen@nhs.net

Study Design

• Study Type: observational
• Observational Model: COHORT
• Time Perspective: PROSPECTIVE
• Sponsor Type: OTHER GOV
• Responsible Party: SPONSOR

Study Record Dates

• First Submitted: April 27, 2022
• First Posted: June 16, 2022
• Study Start: July 1, 2022
• Primary Completion: July 1, 2023
• Study Completion: July 1, 2023
• Last Updated: June 16, 2022

Record last verified: 2022-05

Data Sharing

• IPD Sharing: Will not share