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20-03-2012 | Gastroenterology | Article

Rising number of children with life-limiting conditions in England


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MedWire News: The prevalence of life-limiting conditions (LLCs) among children in England is rising, say researchers.

In a study published in Pediatrics, researchers investigated the prevalence of LLCs, which are defined as incurable and ultimately fatal conditions. They found that prevalence has increased from 25 to 32 cases per 10,000 head of population over 10 years.

Lorna Fraser (University of Leeds, UK) and colleagues identified children aged 0-19 years with LLCs in an English Hospital Episode Statistics dataset ranging from 2000 to 2001 to 2009 to 2010. They defined LLCs using a customized International Classification of Diseases, 10th Revision, set of disease codes.

The analysis included 175,286 patients who had 216,119 life-limiting diagnoses, including congenital diagnoses (30.7%), oncology (13.7%), neurologic (12.0%), hematology (9.8%), respiratory (8.8%), genitourinary (6.2%), perinatal (7.7%), metabolic (3.8%), circulatory (3.8%), gastrointestinal (2.4%), and "other" (1.1%) conditions.

They found that prevalence was highest in children aged 1 year and younger, but the prevalence increased over time for all age groups. This increase was greatest in the 16-19-year-old group (44.8% over 10 years), followed by a 37.9% increase among the 11-15-year-olds, a 31.9% increase in the 6-10-year-olds, a 17.1% increase in the 1-5-year-olds, and a 7.7% increase in those younger than 1 year old.

The researchers also found that 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 significantly higher than the prevalence in the White population (27 per 10,000).

The team reports a "J-shaped" relationship between prevalence and the five categories of deprivation used in the study; the highest prevalence was in the most deprived areas and the lowest was in the second least deprived. Deprivation was measured using an index of multiple deprivation 2007 score, which is an area-based score that includes housing, social, and economic factors.

Fraser and team describe their estimate as "robust" due to their methodology, and anticipate that their coding scheme could be applied to other international datasets.

"The prevalence of LLCs in children in England is double previously reported estimates and is increasing," conclude the study authors. "Our findings demonstrate an increasing need for services for children and their families, particularly those from ethnic minority backgrounds and especially in more deprived areas. This will increase the burden for specialist pediatric palliative care providers and young adult services."

MedWire ( is an independent clinical news service provided by Springer Healthcare Limited. © Springer Healthcare Ltd; 2012

By Chloe McIvor

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