An article published this week in the new edition of the European Respiratory Journal provides a probable estimate of the number of children and adults with cystic fibrosis (CF) in 34 European countries by 2025.  The study entitled, “Future trends in cystic fibrosis demography in 34 European countries,” concluded that at the present rate of diagnosis and life-expectancy, the number of people living with CF into adulthood in the United Kingdom (UK) is expected to increase by as much as 80% by 2025.

CF is a chronically progressive life-threatening disease caused by a genetic mutation that affects the normal functioning of the lungs and digestive system.  In the US, approximately 1,000 new cases are diagnosed yearly with more than 75% of those patients under the age of two.  An estimated 30,000 children and adults in the US, and 70,000 worldwide, have the disease. With advancements in treatment modalities, the clinical picture has change dramatically from the 1950s when few children lived to attend elementary school, to today, where individuals with CF have a lifespan of approximately 30 years; with many patients living into their forties.

With such an increase in the number of individuals diagnosed with CF reaching adulthood, it is important that there be sufficient numbers of specialists and care centers to treat them. To be assured that this number of providers will be reached, first there needed to be a proper evaluation of the changing CF patient demographics.  This study is the first of its kind to conduct an assessment of CF patient numbers and the potential future impact of the changes on healthcare resources throughout Europe and the UK.

The study utilized the European Cystic Fibrosis Society Patient Registry to perform population forecasts. Countries were divided into four groups based on the availability of data, and where no data existed, on the economic state of the country.

The data analysis showed that in the 16 countries where reliable data exists, the number of adults with cystic fibrosis is expected to increase by approximately 75% and the Netherlands and the UK were expected to see the largest rises, 96% and 79%, respectively.

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In a press release about the findings, Professor Stuart Elborn, Dean of the School of Medicine, Dentistry and Biomedical Sciences at Queen’s University Belfast and lead study author, stated, “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 centers to provide optimal care to adults with the disease. 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.”

Ed Owen, chief executive of the Cystic Fibrosis Trust, shared Professor Elborn’s sentiment, “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 this report accurately reflects the considerable pressure on existing specialist services, and it is vital that clinical centers are properly resourced to ensure they provide first class care to people with cystic fibrosis wherever they live.”

Study authors caution that these numbers reflect not only the rate in Europe and the UK, but that similar increases will most likely occur in North America and Australia as well.