Paediatric Spinal Cord Injury and Long-term Social Outcomes.

Study Overview
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Brief Summary
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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.

Detailed Description
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Evidence obtained from adult studies demonstrate that SCI can be a devastating experience that may result in reduced independence and change one's ability to participate in meaningful roles and activities. 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.

Official Title
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Paediatric Spinal Cord Injury and Long-term Social Outcomes.

Conditions
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Spinal Cord Injuries

Participation Criteria
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Eligibility Criteria
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Inclusion Criteria: Age 18- 60 years SCI for over 5 years duration Exclusion Criteria: 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

Ages Eligible for Study
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Minimum Age: 18 Years
Maximum Age: 60 Years

Sexes Eligible for Study
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All

Accepts Healthy Volunteers
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No

Study Plan
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How is the study designed?
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Arms and Interventions

| Participant Group/Arm | Intervention/Treatment |
| --- | --- |
| Adult onset SCI<br>Spinal cord injury accident when the patient is over the age of 18 years old. | |
| Paediatric onset SCI<br>Spinal cord injury accident when the patient is under the age of 18 years old. | |

What is the study measuring?
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Primary Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| 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. |