Increasing complexity in children with life-limiting conditions in England: an analysis of national routine data.

Abstract

The number of children with life-limiting conditions has risen in recent decades, partly due to medical advances enabling increased survival. It is unclear how the medical complexity of this population has changed. To use quantitative analyses of routinely collected healthcare and administrative data from 2003 to 2022 to assess the complexity of children with a life-limiting condition (0-19 years) over time. National hospital data in England (Hospital Episode Statistics) were used to identify children aged 0-19 years with a life-limiting condition from 2003/2004 to 2022/2023. Data were linked with community pharmacy data. Indicators of medical complexity were assessed based on the domains of the medical complexity framework: number of life-limiting and chronic conditions, number of main specialties involved, number of medications, healthcare use and technology dependence (gastrostomies, tracheostomies, jejunostomies) with trends summarised descriptively and associations assessed using multivariable ordinal logistic regression. Most indicators of complexity increased over time, including numbers of health conditions, specialties, technology dependence, emergency department attendances and emergency admissions. Technology dependence rose, particularly for gastrostomies (3505 to 15 949). Children seen by three or more specialties increased from 3096 to 19 312. Rising healthcare use reflected both increasing numbers of children with life-limiting conditions and increasing complexity among individual patients. Increasing age, increasing deprivation and Bangladeshi and Pakistani ethnicity were associated with greater complexity. Healthcare providers must allocate resources to address the increasing complexity of need in children with life-limiting conditions. No data were available on family impacts or family-identified needs.