BMJ  2007;334:1187 (9 June), doi:10.1136/bmj.39234.662384.DB

News

Website gives survival rates for congenital heart disease centres

London

A new NHS website has been launched that will, for the first time, allow parents of children with congenital heart disease to compare the performance of the United Kingdom's specialist children's heart centres before they decide on treatment.

The website, run by the NHS Information Centre and based on figures provided by clinicians and hospitals to a central cardiac database, gives detailed information on the procedures carried out by the 16 centres and survival rates for the most common treatments.

The overall survival rate for neonates (up to 30 days) rose from 96.9% in 2000-1 to 97.8% in 2004-5, the last year for which there are collected statistics. The survival rate for infants (31 days to one year) rose from 94.3% to 96.8% in the same period.

But the data have not been adjusted for risk. Parents and carers are warned not to base their decision solely on which centre has the highest survival rate because a centre that operated on more complex cases "might reasonably be expected to have higher mortality rates than the national average."

The site contains no information on the performance of individual surgeons or consultants. The NHS Information Centre says that it will consider including comparative team performances in the future once it has more robust means of adjusting results to take account of complexity.

John Gibbs, president of the British Congenital Cardiac Association, which helped develop the website with the Society of Cardiothoracic Surgeons of Great Britain, said the data should be as valuable for doctors as for the public. "These data weren't just unavailable to the public previously, doctors have never known this information either."

He hoped doctors would use the site to check and compare their performance. "I hope there will be a culture change rather than looking for somebody to strap to the mast and flog in public."

But the website was criticised by the Children's Heart Federation, an umbrella organisation representing 21 children's groups, for failing to include figures for morbidity as well as mortality.

"We think there's an argument for more information on morbidity," said the chief executive, Anne Keatley-Clarke, "especially as 30% of children who have surgery for congenital heart disease will end up having neurological problems."

She also raised concerns about the site's accessibility: "It seems to be written by well informed medics for other well informed medics. I think many parents will find it incredibly difficult to find their way around."

Congenital heart disease is the most common birth defect in the United Kingdom. Of the eight out of every 1000 babies born with the condition, about half need medical treatment or surgery.

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See www.ccad.org.uk/congenital.

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BMJ 2007 334: 0. [Extract] [Full Text]