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NHS must adapt for rise in cystic fibrosis survival rates

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The number of people living with cystic fibrosis into adulthood in the UK is expected to increase by as much as 80% by 2025, according to a Europe-wide survey.

Cystic fibrosis patients have previously had low life expectancy, but improvements in treatments in the last 30 years have led to an increase in survival with almost all children now living to around 40.

In the first study of its kind, researchers from Belfast and Paris have forecast the number of adults living with the disease in 34 different European countries by the year 2025.

Within the six European countries with the most reliable data, the Netherlands and the UK were expected to see the largest rises – 96% and 79%, respectively.

The researchers divided the countries into four groups based on the availability of data, and where no data existed, on the economic state of the country.

The results showed that in the 16 countries where reliable data exists, the number of adults with cystic fibrosis is expected to increase by approximately 75%.

“We are now concerned that there are insufficient specialist centres to provide optimal care”

Stuart Elborn

The researchers said they expected similar increases in North America and Australia although these areas were not included in the current study, which is published in the European Respiratory Journal.

Lead UK author on the study Professor Stuart Elborn, from Queen’s University Belfast, said: “The estimations we have made show very positive news for cystic fibrosis patients as the average survival age is increasing.

“We are now concerned that there are insufficient specialist centres to provide optimal care to adults with the disease,” he said.

“It is crucial that we take note of these early predictions – which are conservative in nature and the likelihood is that the real figures will be higher – and adapt the NHS to this change,” he added.

The research is part of a joint task force between the European Respiratory Society and the European Cystic Fibrosis Society.

The members of the task force are now calling on healthcare professionals and policymakers to be aware of these expected increases and to develop adult services to meet this demand.

Ed Owen, chief executive of the Cystic Fibrosis Trust, said: “The increasing life expectancy is obviously welcome news and demonstrates the progress made in recent years to improve the lives of people with cystic fibrosis.

But he added: “This report accurately reflects the considerable pressure on existing specialist services in the NHS, and it is vital that clinical centres are properly resourced to ensure they provide first class care to people with cystic fibrosis wherever they live.”

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