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Experts predict sharp rise in cystic fibrosis cases by 2025

50% rise in cases over next decade in Western Europe

Adrian O'Dowd

Thursday, 19 March 2015

Numbers of people living with cystic fibrosis into adulthood in the UK is expected to rise dramatically by 2025, according to a study* published today in the European Respiratory Journal.

The European study found that there could be a rise of 79.3% in cases by 2025 in the UK as part of increases in most European countries.

Currently, around 9,000 people in the UK have cystic fibrosis and the condition affects around 100,000 people globally.

People living with cystic fibrosis have previously had low life expectancy, but improvements in treatments and care in the last three decades have led to an increase in survival with almost all children now living to around 40 years.

In the study, an international team of researchers provided forecasts for the number of adults living with the disease in 34 different European countries by the year 2025.

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.

Using these measurements, predictions were made to estimate the levels of adults with cystic fibrosis by the year 2025.

Results showed that in the 16 countries where reliable data existed, the number of adults with cystic fibrosis was expected to increase by approximately 75%.

Within the six countries with the most reliable data, the Netherlands and the UK were expected to see the largest rises with 96.1% and 79.3% increases respectively.

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

Many cystic fibrosis centres are focused on paediatric care, so the researchers said that if trends continued as predicted, adults living with the disease would not be able to access the specialist care that they needed.

The members of the task force said they wanted healthcare professionals and policymakers to be aware of these expected increases and to develop adult services to meet this demand.

Professor Stuart Elborn, an author of the study 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. It is crucial that we take note of these early predictions and adapt the NHS to this change.”

Ed Owen, chief executive of the Cystic Fibrosis Trust charity, 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 we will not rest until cystic fibrosis is beaten for good.

“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.”

* Pierre-Régis Burgel, et al. Future trends in cystic fibrosis demography in 34 European countries. ERJ March 18, 2015 ERJ-01963-2014. doi: 10.1183/09031936.00196314

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