Cystic Fibrosis Patients Living To Adulthood To Increase 75% By 2025; Health System Must Adapt To Treat Influx Of Adult Patients

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Before 1960, an infant born with cystic fibrosis was not expected to live more than a few months. Today, thanks to advances in treatment and care, these same babies are surviving well into their late 30s. A recent study now predicts that those currently living with cystic fibrosis may live far longer.

“The estimations we have made show very positive news for cystic fibrosis patients as the average survival age is increasing,” Professor Pierre-Régis Burgel, an author of the study from Cochin Hospital, Paris, said in a recent press release.

The study, now published in the European Respiratory Journal, also highlights another issue that this increase in life expectancy will bring. Such a large influx of adult-aged cystic fibrosis patients is something health care systems have never seen before and must prepare to deal with.

The study was based on data from 34 European countries but projected that in 16 countries with the most reliable data, the amount of cystic fibrosis patients living into adulthood is expected to increase approximately 75 percent by 2025.

Cystic fibrosis is a fatal genetic condition that causes damage to the lungs and pancreas. In patients with this condition, a genetic mutation causes the normal mucus secreted by these organs to be thick and sticky. This leads to problems with breathing and digestion. Unfortunately, there is yet no cure.

Currently health care facilities are not prepared to deal with such large numbers of adult cystic fibrosis patients. With today’s child cystic fibrosis patients expected to reach adulthood in only 10 years, the authors urge that preparation start today.

“Health care systems will need to adapt to this change, particularly in countries with less well-established adult services,” Regis Burgel said.

Although the treatment of cystic fibrosis does not change significantly as a child ages, there are additional age-related factors that must come into context. For example, according The Cystic Fibrosis Foundation, with age the disease can become more serious. Also, as time progresses, cystic fibrosis can lead to other serious health conditions. Diabetes.co.uk estimated that around 40 to 50 percent of all adult cystic fibrosis patients went on to develop diabetes. People with cystic fibrosis also have increased chances of developing joint pain and bone disease as they age.

In addition to the health concerns, advancement in age means that an unprecedented number of cystic fibrosis patients are reaching the reproductive age. Fertility in cystic fibrosis patients differs greatly depending on gender. For example, the genetic mutation which causes the disease often leads to infertility in men. Women, on the other hand, tend to have the same reproductive capabilities as women without the disease. Since cystic fibrosis is a genetic condition, gene therapy and helping patients make well-informed decisions when it comes to reproduction will likely become a larger concern.

Along with delivering the good news of increasing lifespan, the report hopes to motivate international health care providers and policymakers to start now at developing adult cystic fibrosis services to meet the future demands.

Source: PR Burgel, G Bellis, H Olesen, et al. Future trends in cystic fibrosis demography in 34 European countries. European Respiratory Journal. 2015.

Correction: A previous version of this story incorrectly stated that the lifespan of cystic fibrosis patients is will increase 75 percent by 2015. Although the average survival age is rising, it has been revised to read that the number of adults living with cystic fibrosis will increase 75 percent by 2015.

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