According to a recent study comparing data from 2010 concerning the lung function of children and young adults with cystic fibrosis in the United States (US) and the United Kingdom (UK), published in BMJ Thorax, US children with the disease reveal better lung function overall.
CF patients aged between six and twenty five years old were compared in the study, and the results showed that lung function in US patients is 3.31% higher, on average.
“Cystic fibrosis is a degenerative condition which attacks the respiratory organs and destroys the lungs,” explained Janet Allen, Director of Research and Care at the Cystic Fibrosis Trust. “Fifty years ago, when the Cystic Fibrosis Trust was established, 80% of people with cystic fibrosis did not reach their fifth birthday. Today, over half of patients live into their 30s. But it is still unacceptable that so many people die so early. Comparing clinical outcomes between countries can be informative where clear differences in care models and treatment approaches occur and it is important that we learn from other countries.”
According to the study, children and young adults from the UK have may have less access to chronic pulmonary therapies and chronic macrolide antibiotics compared to US patients. The researchers also report that there are major differences in how hypertonic saline and rhDNase is used therapeutically as well.
Both countries’ healthcare systems are well-developed systems, and a large number of advances in treating the disease have been accomplished in the last two decades in both countries as well. An important difference to note, however, is that the UK maintains a National Health Service care, unlike the US, which results in differences in how cystic fibrosis patients are managed. Also, US patients visit specialized centers to treat the disease regularly, whereas UK patients are typically treated by general practitioners in local hospitals and clinics, and rarely see specialists.
“This paper shows the power of Registry data in helping us ensure we are giving the best to our patients. At this stage there is a lot more work to do to identify the cause of the differences. It is important that we all look at our practice as a result of this paper and check whether we are using the medicines already available in the best way. We also need to look at how we deliver care,” said Diana Bilton, Chair of the UK Cystic Fibrosis Registry and Consultant Physician at Royal Brompton Hospital.
The report does not explore all details about the differences in lung function between counterparts, and further studies are required to understand what treatment modifications in UK patients are necessary, and if any changes in delivered care, since 2010, had positive outcomes.
“We need to carry out further investigations into the reasons for the differences in lung function between young UK and US patients, and determine whether this is just a one off for the 2010 study cohort,” added Janet Allen. “The Trust is also continuing to fund research into innovative and live-changing treatments that will not only ensure that all patients with cystic fibrosis receive the very best care and treatment, but that they will one day have the same life chances as those who don’t have the condition.”