Tuesday, 18 March 2008

Cerebral palsies on increase?

New US figures suggest Yes

Like it or not (I personally do not), Conductive Education is closely identified in many people’s minds with the cerebral palsies. And like Conductive Education itself, the cerebral palsies have suffered from long-term problems of definition, one corollary of which is not knowing exactly how many children and adults have such conditions.

People out there, not least media, politicians, administrators and grant-givers, like to know how many people are involved. They also like to know whether such conditions are now more or less common than they were.

There are all sorts of technical reasons why there can be no crisp answers to such questions, and the people who ask them can get very irritated to hear the various qualifications that an honest reply entails. Advocates of interventions on behalf of other conditions, however, seem happy enough to stand their ground on statistics, without any such qualms. So, if you are in the position of having to argue the amount of need within a given population, local or national, there is an interesting new epidemiological study that you might be pleased to quote.

New epidemiological study

The following is extracted from a report by PR-USA.net

The study, published in the journal Pediatrics on 4 March by the Centers for Disease Control and Prevention, shows an increase in the prevalence of cerebral palsy. The new study shows an average of 3.6 per 1,000 8 year-old children or about 1 in 278 children, higher than the previously accepted numbers of about 1 in 666 children.

The study was carried out in three sites around the United States. It reported the highest prevalence among boys, African-Americans and those living in low- and middle-income neighborhoods. Prevalence rates were lowest among Hispanic children.

The report serves as another reminder to parents of how medicine in the United States, with the focus on cutting-edge treatments, can still fail hundreds of thousands of children impacted by a common yet complex disorder. Medical researchers are still unsure about the causes of cerebral palsy. Twpolicy makers and federal research funding agencies to make CP a far higher national priority, says Diane Damiano, President of the American Academy of Cerebral Palsy and Developmental Medicine. 'Recent scientific advances in the understanding of brain development and plasticity offer much hope for increasing our understanding of this disorder and stimulating the development of novel strategies to optimize functioning, but are not possible without funding to attract and support the scientists needed to provide these breakthroughs.'

Parents resort to sometimes risky surgical treatments and the use of off-label drugs like Botox to try and help their children since there is little consensus among the American medical community of how to best treat cerebral palsy despite how many children have it. 'Parents feel lost and hopeless. There are very few dedicated CP resources out there and treatment options really haven't changed very much in 50 years,' adds Cynthia Frisina Gray, co-founder of the Reaching for the Stars organisation.

Lies, damn lies and statistics?

I’m sure that every word in this recent study is true. At the same time, as is often the way with epidemiological studies, I can think of important questions that might be raised at a technical level, especially when it comes to extrapolating figures to other populations. No matter, there is a war on, a battle for scarce resources, one likely to intensify in the developed economies with looming recession/depression. Statistics are an important political weapon in this struggle for survival, as are possibilities of discrimination.

A growing number of people with cerebral palsy conditions presents an important rhetorical point in arguing for resources. The finding that in the United States cerebral palsies might be more prevalent in Afro-American populations, for example, chimes awkwardly with the way that the conductive movement in that country seems (hardly uniquely) a product of small-towns and the white suburbs. How such dissonance might be argued is a trickier issue!

And of course, the potential transferability of such epidemiological findings to other gene pools and other societies, even such a small step as across to Europe and the United Kingdom, is a whole other can of worms at a technical level. But ought such technical squeamishness be allowed to stand in the way of a good story when presenting a case for political or financial support?

I am so glad that I am no longer in the position to face such a dilemma.

References

New CDC Study Shows Increase in Cerebral Palsy - 1 in 278 Children Affected
http://www.pr-usa.net/index.php?option=com_content&task=view&id=80365&Itemid=9

Marshalyn Yeargin-Allsopp, et al., Prevalence of cerebral palsy in 8-year-old children in three areas of the United States in 2002: a multisite collaboration, Pediatrics, vol. 121 no. 3, March 2008, pp. 547-554
http://pediatrics.aappublications.org/cgi/content/abstract/121/3/547?rss=1

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