{
  "abstract": "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.",
  "authors": [
    {
      "affiliations": [
        "Department of Health Sciences, University of York, York, UK"
      ],
      "name": "Andre Bedendo"
    },
    {
      "affiliations": [
        "Department of Health Sciences, University of York, York, UK"
      ],
      "name": "Stuart Jarvis"
    },
    {
      "affiliations": [
        "Noah's Ark Children's Hospital for Wales, Cardiff, UK"
      ],
      "name": "Richard D W Hain"
    },
    {
      "affiliations": [
        "Cicely Saunders Institute, King’s College London, London, UK"
      ],
      "name": "Lorna K Fraser"
    }
  ],
  "title": "Deaths among children with life-limiting or life-threatening conditions in Wales: a full population cohort",
  "uid": "4c1902f4-ebdc-5dc3-a9b9-fd115bdeb0b8"
}