Deaths among children with life-limiting or life-threatening conditions in Wales: a full population cohort

TL;DR

This study analyzed deaths in children with life-limiting conditions in Wales from 2003 to 2020, finding that nearly 40% of deaths in children up to 25 years were related to these conditions.

Contribution

The study provides the first full population cohort analysis of LLC-related deaths in Wales, highlighting trends and demographic patterns.

Findings

The proportion of LLC-related deaths increased from 36% to 42% between 2003–2008 and 2015–2020.

Neurological conditions were the most common LLC diagnostic group, accounting for 22% of LLC-related deaths.

One-third of LLC-related deaths did not have a life-limiting diagnosis listed on the death certificate.

Abstract

To describe trends in demographic and clinical characteristics of children with a life-limiting condition (LLC) who died in Wales.

Linked full population cohort observational study of all children and young people (CYP) aged 0–25 years old with an LLC, resident in Wales from 2003 to 2020. Deaths were identified using four data sources: death registries, congenital anomaly, inpatient and day case activity, and accident/emergency attendances.

Of the 6828 recorded deaths, 39% (N=2633) had an LLC-related diagnosis. The proportion of LLC deaths increased from 36% to 42% from 2003 to 2008 to 2015to 2020, with 43% (1135/2633) of LLC-related deaths occurring among children aged up to a year old. Among 5–11 years old, 68% (276/406) had an LLC diagnosis on their death certificate. Of all deaths with an LLC-related diagnosis, 28% (738/2633) occurred in the most deprived quintile areas. Neurological conditions were the most common LLC diagnostic group (22%, 570/2633). Among those with an LLC, 63% (1654/2633) had the condition reported as cause of death (Underlying: 39% (1017/2633); Related: 24% (637/2633)).

The proportion of LLC-related deaths in Wales increased 6% from 2003 to 2020. LLC-related deaths accounted for nearly 40% of total deaths in CYP up to 25 years. One-third of these deaths did not mention a life-limiting diagnosis on the death certificate. Seventy per cent of deaths among the 5–11 age group had a life-limiting diagnosis present.

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