Paediatric Spinal Cord Injury and Long-term Social Outcomes.

Robert Jones and Agnes Hunt Orthopaedic and District NHS Trust

Status

Unknown

Conditions

Spinal Cord Injuries

Study type

Observational

Funder types

Other

Identifiers

NCT05421260

RL1 815

Details and patient eligibility

About

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.

Full description

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.

Enrollment

100 estimated patients

Sex

All

Ages

18 to 60 years old

Volunteers

No Healthy Volunteers

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