King's College London

Life-limiting conditions (LLC) are serious health conditions in which the child's life may be shortened. It was estimated that 86,000 children (0 – 19 years) lived with an LLC in England in 2017/18. Previous research showed that the number of children with LLC was increasing.

Having up-to-date data is pivotal for service planning and provision. The project uses quantitative analyses of routinely collected healthcare and administrative data from 2003 to 2022 to provide updated figures on the prevalence of children (0-25 years) with LLC in England, and the demographics of this population. The project will also provide data for Integrated Care Boards (ICBs) on the number of children with LLC in their geographic area which is important for service planning.

One current challenge in the field is the lack of information on the severity or complexity of the child’s condition. Complexity can be assessed by using information on key features such as the number of health conditions, the number of hospital admissions or emergency visits, and the number of medications the child takes. Another important feature for complexity is the number of children dependent on medical technologies such as feeding tubes or tracheostomies. This project will assess the complexity of the population of children with LLC to aid service planning and delivery.

This study aims to use quantitative analyses of routinely collected healthcare and administrative data from 2003 to 2022 to update the prevalence of children (0-25 years) with a life-limiting condition in England and to assess the complexity of this population to aid service planning and delivery.