Research Priorities for Spinal Cord Injury in Children
Research type
Research Study
Full title
Research Priorities for Spinal Cord Injury in Children, Adolescents and Young Adults: An International Service User Survey
IRAS ID
170166
Contact name
Julian Taylor
Contact email
Sponsor organisation
Buckinghamshire Healthcare NHS Trust
Duration of Study in the UK
1 years, 7 months, 15 days
Research summary
The study aims to identify most important research topics for spinal cord injury (SCI) in children, adolescents and young adults through survey questionnaires. These questionnaires will reveal which aspects of SCI parents/caregivers and children feel are important for researchers to address. This will help ensure that researchers target clinically and socially relevant issues for service users.
The survey consists of four questionnaires (attached to this IRAS application). The first questionnaire will address characteristics of SCI and background information about the participant including age, gender, ethnicity and education. The second is a validated measure used to assess the quality of life of both healthy children and children with chronic conditions and the third assesses how satisfied individuals are with a number of life and health domains, as well as how important these items are to their well-being and whether they view them as a research priority. The fourth questionnaire will be completed by the healthcare professional to detail neurological information for correct survey interpretation.
Each participant will only be asked to fill in the survey once. This is anticipated to take about 40 minutes. The survey does not have to be completed in one sitting, participants can complete it over a number of sessions at their leisure. Most participants will fill in the survey online, but paper copies will be supplied where necessary. Participants can complete the survey in their own home.
Participants with different age groups will be presented with age-appropriate questions, and younger children will be asked less questions, with parents asked to fill in proxy reports.
The survey will be distributed internationally over a period of 10 months from centres involved in the treatment and rehabilitation of paediatric patients with SCI.
REC name
London - Harrow Research Ethics Committee
REC reference
16/LO/0835
Date of REC Opinion
6 Oct 2016
REC opinion
Further Information Favourable Opinion