Paediatric Spinal Cord Injury and Long-term Social Outcomes.
NCT ID: NCT05421260
Last Updated: 2022-06-16
Study Results
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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UNKNOWN
100 participants
OBSERVATIONAL
2022-07-01
2023-07-01
Brief Summary
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Detailed Description
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Sadly, there is a paucity of similar studies into paediatric onset SCI. The profile of paediatric patients with SCI is different from adults and their long-term wellbeing outcomes are not well researched. Maximizing activity and participation following SCI is an important aspect of rehabilitation. Community integration is a long process that might take months to years after discharge from hospital after the initial injury. After discharge from hospital the subsequent management is done by community team comprising of physio and occupational therapists who are pivotal in supporting re-engagement in social activities.
There is a need for thorough analysis regarding the social outcomes of adults living with paediatric onset SCI. Quality of life, or life satisfaction, is arguably the most important outcome for children and adolescents with SCIs. This outcome may be the key to assessing the success of our treatment pathways and will allow us to target the resources available for rehabilitation to maximize the effects of rehabilitation programs.
There are large gaps in the literature regarding paediatric SCIs. Clinicians often struggle to give informed answers to questions such as:
* Will a child with SCI experience good quality of life in adulthood?
* Is there a difference in social activity and participation between adult onset and paediatric onset injuries?
* What helps social activity and participation of SCI patients?
* Is tetraplegia worse than paraplegia for social participation?
* Does social participation affect quality of life?
* Where can we target resources in rehabilitation program?
This study aspires to address these questions by conducting this questionnaire study to understand the factors that affect social participation. This will enable to highlight areas to target future resources for rehabilitation programmes.
Conditions
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Study Design
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COHORT
PROSPECTIVE
Study Groups
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Adult onset SCI
Spinal cord injury accident when the patient is over the age of 18 years old.
No interventions assigned to this group
Paediatric onset SCI
Spinal cord injury accident when the patient is under the age of 18 years old.
No interventions assigned to this group
Eligibility Criteria
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Inclusion Criteria
* SCI for over 5 years duration
Exclusion Criteria
* Patients not able to speak on phone
* Patients with intellectual disability affecting their ability to speak without aids.
* Cauda equina syndrome
18 Years
60 Years
ALL
No
Sponsors
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Robert Jones and Agnes Hunt Orthopaedic and District NHS Trust
OTHER_GOV
Responsible Party
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Central Contacts
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References
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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.
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.
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.
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.
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.
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.
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.
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
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.
Other Identifiers
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RL1 815
Identifier Type: -
Identifier Source: org_study_id
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