Sharp rise in uk adults living with cystic fibrosis, predicts task force

People living with cystic fibrosis have previously had low life expectancy, but improvements in treatments in the last three decades have led to an increase in survival with almost all children now living to around 40 years. In countries where reliable data exists, the average rise in the number of adults with CF is expected to be around 75 per cent over the next decade.

In the first study of its kind, published in the European Respiratory Journal, researchers from Belfast and Paris have provided forecasts for 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 (96.1 per cent and 79.3 per cent respectively).

Lead UK author on the study, Professor Stuart Elborn, Dean of the School of Medicine, Dentistry and Biomedical Sciences at 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 -- which are conservative in nature and the likelihood is that the real figures will be higher -- and adapt the NHS to this change."

Vice-Chancellor of Queen's University Belfast, Professor Patrick Johnston said: "Although this is good news in one sense, these figures pose a major challenge to healthcare providers in that adult cystic fibrosis services will need to be developed quickly and effectively to meet demand. Queen's was recently ranked amongst the Top 10 institutions in the UK for research intensity based on the results of 2014 Research Excellence Framework. This study is yet another example of how Queen's researchers are continuing to advance knowledge and change lives."

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. 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 per cent. Researchers expect similar increases in North America and Australia although these areas were not included in this study. Download a graph showing the predicted percentage increases in the 16 countries.

Many cystic fibrosis centres are focused on paediatric care therefore if trends continue as predicted, adults living with the disease may not be able to access the specialist care they need.

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