Paediatric Spinal Cord Injury and Long-term Social Outcomes.

Online since 12 July 2022, updated 892 days ago

About this trial

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 i...

Included participants

Gender
All
Age
18 - 60 years
Injury level
Level not specified
  • Severity (AIS)?
  • Time since injury
    ≥ 5 years
    Healthy volunteers
    No
    Level not specified

    What’s involved

    Type

    Observational

    Details

    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.

    Potential benefits

    Good to know: Potential benefits are defined as outcomes that are being measured during and/or after the trial.

    Wings for Life supports SCITrialsFinder

    Wings for Life has proudly initiated, led and funded the new version of the SCI Trials Finder website. Wings for Life aims to find a cure for spinal cord injuries. The not-for-profit foundation funds world-class scientific research and clinical trials around the globe.

    Learn more

    • Trial recruitment status
    • Unknown
    • Trial start date
    • 1 Jul 2022
    • Organisation
    • Robert Jones and Agnes Hunt Orthopaedic and District NHS Trust
    • Trial recruitment status
    • Unknown
    • Trial start date
    • 1 Jul 2022
    • Organisation
    • Robert Jones and Agnes Hunt Orthopaedic and District NHS Trust

    Wings for Life supports SCITrialsFinder

    Wings for Life has proudly initiated, led and funded the new version of the SCI Trials Finder website. Wings for Life aims to find a cure for spinal cord injuries. The not-for-profit foundation funds world-class scientific research and clinical trials around the globe.

    Learn more