Cystic fibrosis statistics

Cystic fibrosis is a life-shortening, inherited disease that affects many organs including the lungs. It causes the body to produce thick mucus, which affects the lungs and digestive and reproductive systems in particular.

One in 25 people carries a faulty cystic fibrosis gene. For someone to be born with cystic fibrosis, both parents must carry a faulty gene. There are specific treatments used for rare gene variants, but treatment for the lung manifestations otherwise consists of physiotherapy and antibiotics.

These statistics on cystic fibrosis in the UK were compiled as part of our Respiratory Health of the Nation project by teams at St George’s, University of London, Nottingham University and Imperial College London.

Deaths from cystic fibrosis

How many males and females died from cystic fibrosis in 2012?

In 2012, of the 111 people who died from cystic fibrosis, 54 were males and 57 were females (0.1% of deaths from lung disease). The total number of deaths was down from 122 in 2008.

UK deaths from cystic fibrosis compared with other lung diseases, 2012

How old were the people who died from cystic fibrosis in 2012?

Although there has been a considerable increase in life expectancy over recent years, the majority of deaths from cystic fibrosis still occur in adults aged under 65. Most deaths occur in the third and fourth decades of life.

In 2012, of the 111 people who died from cystic fibrosis:

  • 105 were aged 15–64 years old;
  • 4 were aged 0–14 years; and
  • 2 were 65 and above.

How many males and females died from cystic fibrosis in each UK region in 2008–12?

Across the UK in 2008–12, 285 males and 313 females died from cystic fibrosis.

England: The death rate from cystic fibrosis was similar across all countries and regions of England. Only London differs significantly from the UK average.

Scotland: The death rate was higher than in the UK generally, particularly among males.

Wales: The death rate did not differ significantly from the UK as a whole.

Northern Ireland: The death rate did not differ significantly from the UK as a whole.

Cystic fibrosis mortality ratios by UK regions, males and females, 2008–12

Emergency hospital admissions

How do rates of emergency admission to hospital for cystic fibrosis vary across the UK, 2008–12?

Cystic fibrosis accounts for 9,500 hospital admissions and over 100,000 hospital bed days a year. A third of these are used by children under 15.

The disease has more hospital admissions and bed days per patient than most lung diseases. Each person with cystic fibrosis is admitted on average once each year, and each admission lasts on average for about 10 days. These figures are considerably greater than, for instance, those for COPD at just over 0.1 admissions and almost 1 bed day used for each patient.

England: There were higher rates of emergency admission in the North West, the East Midlands and the South East than in the UK generally. Rates of admission were notably lower in Yorkshire and the Humber, the West Midlands and London.

Scotland: Rates of admission were higher than in the UK generally.

Wales: Rates of admission were similar to the UK generally. 

Northern Ireland: Rates of admission were notably lower than in the UK generally.

Cystic fibrosis hospital admission ratios, males and females, in each UK region, 2008–12