Researchers say that more kids are now living longer with serious ills, which has led to “life-limiting" conditions becoming more widespread -- along with a need for special care of these children.

The conditions include life-threatening but treatable diseases like cancer, as well as incurable genetic diseases -- such as the neurological conditions muscular dystrophy and spinal muscular atrophy, and metabolic disorders like Pompe disease.

Such diseases remain rare in children overall. But based on the new findings, they are affecting English children and teens at double the rate that was estimated five years ago.

A 2007 study concluded that about 16 out of 10,000 English children had a life-limiting condition. Now it looks closer to 32 per 10,000, according to the researchers on the new report, which appears in the latest issue of Pediatrics.

The difference can be traced to differences in how the studies were conducted, lead researcher Lorna K. Fraser, of the University of Leeds, told Reuters Health in an email.

The older estimate was based on death certificate information, which is not always reliable. Fraser's team based their numbers on disease-classification codes used in English hospital admissions records, which give a better idea of how many people are treated for a condition.

But the researchers also found a rising prevalence of life-limiting conditions over time. In 2000-2001, admissions records showed about 25 out of every 10,000 English kids was living with such a disease. By 2010, that figure had risen to 32 per 10,000 -- which translates to about 40,000 English children and teens.

Much of the shift seems to be attributable to better survival, the researchers say, since the biggest jump in prevalence was among 16- to 19-year-olds.

But, Fraser said, there is no database that gives the number of English children newly diagnosed with a life-limiting disease each year. So the researchers can't rule out the possibility that some conditions may be occurring at a rising rate.

With more kids surviving later into childhood, or young adulthood, there will be a growing need for palliative medical care specifically for those age groups, according to Fraser.

Palliative care refers to end-of-life services aimed at improving quality of life for people with incurable diseases -- by treating pain and helping families cope with distress, for example. And children and young adults with life-shortening diseases may need years of palliative care, according to Fraser's team.

This study did not look at palliative care availability for children and young adults. But an independent 2007 report did, Fraser said.

They found that there was huge variation in the availability of services across England," she said.

Our study," Fraser added, indicates that there is potentially more unmet need that was not fully identified in this report."

And that need might be most acute in England's lowest-income areas: Fraser's team found that the rates of life-limiting conditions were highest in the country's most deprived" areas.

The reason for the finding is not known, Fraser said -- but it's in line with other studies that have found higher rates of various chronic diseases in lower-income areas.

It is not clear," Fraser said, whether the incidence of life-limiting conditions is higher in deprived areas or whether the financial impact of having a child with a life-limiting condition can result in families moving to more deprived areas."

This study affords a real opportunity to better understand need and should help commissioners and service providers alike to better plan and deliver sustainable services when and where they are most needed," said Barbara Geld, CEO of the UK charity Together for Short Lives.

There are some excellent" palliative services for young people, Geld said in a news release from Leeds.

But, she added, there are still major gaps in service provision and young people struggle to find appropriate care, housing, education and the work and social opportunities that they deserve."

SOURCE: bit.ly/zHViAY Pediatrics, online March 12, 2012.

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