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Published on: June 20, 2020

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

Bethan Page1, Stuart William Jarvis2, Lorna K Fraser3

  • 1King's College London, London, UK.

Archives of Disease in Childhood
|July 13, 2026
PubMed

Insights

The medical complexity of children with life-limiting conditions has significantly increased over two decades, marked by more health conditions, technology dependence, and healthcare utilization. This trend necessitates greater resource allocation for pediatric care.

Area of Science:

  • Pediatric Healthcare Research
  • Medical Complexity Assessment
  • Public Health Data Analysis

Background:

  • Medical advances have increased survival rates for children with life-limiting conditions.
  • The evolving medical complexity of this pediatric population remains largely uncharacterized.
  • Understanding trends in complexity is crucial for effective healthcare planning.

Purpose of the Study:

  • To quantitatively assess changes in medical complexity among children (0-19 years) with life-limiting conditions.
  • To analyze trends from 2003 to 2022 using national healthcare and administrative data.
  • To identify factors associated with increased medical complexity in this cohort.

Main Methods:

  • Utilized England's national hospital data (Hospital Episode Statistics) and linked community pharmacy data (2003/2004-2022/2023).
  • Assessed medical complexity using indicators such as number of conditions, specialties, medications, technology dependence (gastrostomies, tracheostomies), and healthcare use.
  • Employed descriptive summaries for trends and multivariable ordinal logistic regression for association analysis.

Main Results:

  • Key indicators of medical complexity, including number of health conditions and specialties, increased significantly over the study period.
  • Technology dependence, particularly gastrostomies, saw a substantial rise (3505 to 15,949).
  • Increased healthcare use, emergency department attendances, and emergency admissions were observed, linked to both population growth and individual patient complexity. Bangladeshi and Pakistani ethnicity, increasing age, and deprivation were associated with greater complexity.

Conclusions:

  • Healthcare systems must adapt resource allocation to manage the escalating complexity of care for children with life-limiting conditions.
  • The findings highlight a growing need for specialized and integrated pediatric healthcare services.
  • Further research is needed to incorporate family-reported needs and impacts into care planning.
Abstract

Keywords:
Child Health ServicesEpidemiologyHealth PolicyPaediatricsPalliative Care

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