Life-limiting or life-threatening condition among children in Wales
Research type
Research Study
Full title
Trends in the Prevalence and Complexity of Children with a Life-limiting or Life-threatening condition in Wales
IRAS ID
300939
Contact name
Lorna Fraser
Contact email
Sponsor organisation
University of York
Duration of Study in the UK
1 years, 6 months, 31 days
Research summary
Life-limiting conditions (LLC) are serious health conditions in which the child's life may be shortened. It was estimated that 3,200 children (0 – 19 years) lived with an LLC in Wales in 2009/2010. The estimation is likely to be underestimated when considering current data from England and Scotland showing a markedly increase over the last decade. Children living with an LLC usually have repeated admissions to hospitals and requires healthcare including palliative care for many years. These data are pivotal for service planning and provision.
One challenge in the field is the lack of information on the severity or complexity of the child’s condition. This could be assessed using key features like the number of health conditions and the use of medical technologies and problem severity by children’s clinical stages. Wales is in the unique position of having full population data in the Secure Anonymised Information Linkage (SAIL) system. The use of the SAIL databank would enable to update the national prevalence of children living with LLC in Wales and to determine their clinical condition and complexity.
We need to link together information from SAIL with hospital data from NHS digital and the Paediatric Intensive Care Audit Network (PICANet). For correct data linkage, we need a secure transfer of identifiable data from all Wales residents aged 0-25 years from 2003-2020 to a SAIL trusted third party NHS Wales Informatics Service (NWIS). Researchers from the University of York will have access to the pseudonymised dataset via secure remote access provided by SAIL. This ensures that no data will be stored at the University of York.
We will use the information to provide an updated estimate of the number of children in Wales who are living with an LLC and to assess the complexity and severity of this population to aid service planning and delivery.REC name
London - Bloomsbury Research Ethics Committee
REC reference
21/LO/0567
Date of REC Opinion
11 Aug 2021
REC opinion
Favourable Opinion