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

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