Survival in Children and Young People with Life-limiting Conditions
Research type
Research Study
Full title
Life Limiting Conditions in Children and Young People in England: Prevalence and Survival
IRAS ID
134706
Contact name
Lorna K Fraser
Contact email
Sponsor organisation
University of York
Duration of Study in the UK
1 years, 8 months, 31 days
Research summary
There are currently little robust data available on the survival of children and young people with Life-limiting conditions (LLC) in England and therefore the length of time that they would benefit from children’s palliative and hospice services. Therefore planning the current and future need for these services is difficult. Although previous analyses of HES data showed an increasing prevalence of children with a LLC in England, data is requested for this specific project to fully investigate the current and future services needs of this population.
The aims of this study are to:
1. Assess survival for children and young people with life-limiting conditions in relation to demographic and clinical profiles (this can only be undertaken by having death certificate data).
2. Update the prevalence of children and young people with Life-limiting conditions in England (2000-2014).
3. Describe the trends in prevalence of Life-limiting conditions within ethnic minority groups within England (2009-2014).
A pseudonymised dataset of all hospital admissions (HES) for children with a LLC will be requested from the Health and Social Care Information Centre (HSCIC). This data will be linked to the ONS death data if the child has died, the fields requested will include date of death, place of death and cause of death.
The long time series of these data are required in order to adequately assess survival in this population of children. National data is required as these are still relatively uncommon conditions.REC name
East Midlands - Derby Research Ethics Committee
REC reference
16/EM/0013
Date of REC Opinion
21 Jan 2016
REC opinion
Favourable Opinion