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American Academy of Pediatrics
Article

Rising National Prevalence of Life-Limiting Conditions in Children in England

Lorna K. Fraser, Michael Miller, Richard Hain, Paul Norman, Jan Aldridge, Patricia A. McKinney and Roger C. Parslow
Pediatrics April 2012, 129 (4) e923-e929; DOI: https://doi.org/10.1542/peds.2011-2846
Lorna K. Fraser
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Michael Miller
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Richard Hain
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Paul Norman
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Jan Aldridge
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Patricia A. McKinney
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Roger C. Parslow
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Abstract

BACKGROUND: Life-limiting conditions (LLCs) describe diseases with no reasonable hope of cure that will ultimately be fatal. For children with these diseases, palliative care services should be available but few data are available to estimate the burden of these conditions.

METHODS: Children (0–19 years) with LLCs were identified within an English Hospital Episode Statistics dataset (2000/2001–2009/2010) by applying a customized coding framework of the International Classification of Diseases, 10th Revision, disease codes. Prevalence per 10 000 population (0–19 years) was calculated by age, diagnostic group, ethnicity, deprivation, and region for each year.

RESULTS: The Hospital Episode Statistics extract contained 175 286 individuals with 1 or more LLCs of which congenital anomalies were the most common (31%). Prevalence increased over 10 years from 25 to 32 per 10 000 population. Prevalence in the South Asian (48 per 10 000); black (42 per 10 000); and Chinese, mixed, and “other” (31 per 10 000) populations were statistically significantly higher compared with the white population (27 per 10 000). Prevalence shows an inverse J-shaped relationship with 5 categories of deprivation, with the highest prevalence in the most deprived areas and the lowest in the second least deprived.

CONCLUSIONS: In 2010, the prevalence of LLCs in children in England was double the previously reported estimates and had increased annually in all areas over the past decade. This clearly identifies an escalating need for specialist pediatric palliative care services. When planning services for these increasing needs, the excess prevalence in ethnic minority groups, especially in deprived areas, needs to be considered.

KEY WORDS
  • life-limiting conditions
  • palliative care
  • HES
  • ethnicity
  • deprivation
  • Abbreviations:
    CI —
    confidence interval
    GOR —
    government office region
    HES —
    Hospital Episodes Statistics
    ICD-10 —
    International Classification of Diseases, 10th Revision
    LAD —
    local authority district
    LLC —
    life-limiting condition
    NHS —
    National Health Service
    • Accepted November 29, 2011.
    • Copyright © 2012 by the American Academy of Pediatrics

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    Pediatrics
    Vol. 129, Issue 4
    1 Apr 2012
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    Rising National Prevalence of Life-Limiting Conditions in Children in England
    Lorna K. Fraser, Michael Miller, Richard Hain, Paul Norman, Jan Aldridge, Patricia A. McKinney, Roger C. Parslow
    Pediatrics Apr 2012, 129 (4) e923-e929; DOI: 10.1542/peds.2011-2846

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    Rising National Prevalence of Life-Limiting Conditions in Children in England
    Lorna K. Fraser, Michael Miller, Richard Hain, Paul Norman, Jan Aldridge, Patricia A. McKinney, Roger C. Parslow
    Pediatrics Apr 2012, 129 (4) e923-e929; DOI: 10.1542/peds.2011-2846
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