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

Paediatric Epidemiology Group, Division of Epidemiology, University of Leeds, Leeds, UK.
PEDIATRICS (Impact Factor: 5.47). 03/2012; 129(4):e923-9. DOI: 10.1542/peds.2011-2846
Source: PubMed


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.
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.
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.
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.

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    • "Despite variations between countries, continuing improvements in medical care means increasing numbers of children with life-limiting and disabling conditions are surviving longer (Burns et al. 2010, Dybwik et al. 2011, Fraser et al. 2012) and many require palliative care (Downing et al. 2012). This diverse group of children have complex, often unpredictable, continuing care needs and may require technological intervention and/or palliative care for years (Department of Health 2011). "
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    • "To define the population of children needing palliative care in an essential first step in considering any research question that impacts specially on that group. The Directory has already been used for this purpose in research [16,17] and service development [18]. Prevalence data, in particular, are key to rational service development, but for LLC there is no consistent relationship with incidence. "
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