Leading experts in treatment for cystic fibrosis from around the world, have come together to create a new document to help people living with the condition.
‘The Exeter Activity Unlimited Statement’ is a document of 24 evidence-driven statements, designed to help healthcare professionals in determining the right activity and exercise plan to suit the needs of individuals living with cystic fibrosis.
The study brought together 39 collaborators from the UK, USA, Canada, Australia, Ireland, Greece, Chile, France, and the Netherlands, and included a mix of academic and clinical professionals.
What is cystic fibrosis?
Cystic fibrosis is a hereditary condition caused by a faulty gene that affects the entry and exit of salt and water in cells. The result is an accumulation of sticky mucus in the lungs and digestive system, which can lead to challenging symptoms. Approximately 11,000 people in the UK live with cystic fibrosis, and a further 100,000 people worldwide. Currently, there is no cure for the condition, but treatment for cystic fibrosis can include physical activity and exercise.
“The promotion of physical activity for people with complex medical conditions is not usual, although evidence shows it to be an effective treatment for cystic fibrosis. This consensus integrates physiological, psychological, and social benefits of being physically active to support clinical teams and help people with cystic fibrosis lead a life unlimited,” said Professor Craig Williams, lead researcher and Professor of Paediatric Physiology and Health at the University of Exeter.
The Cystic fibrosis Trust was awarded a grant of £750,000 to aid the development of a comprehensive strategy that would enable people with cystic fibrosis to access individualised activity and exercise routines. The international, multidisciplinary research was led by researchers at the University of Exeter.
Treatment for cystic fibrosis needs to be personalised
“Research has shown that there is a lack of confidence and understanding in how to utilise exercise as a treatment for cystic fibrosis, therefore, we hope that these resources can provide an easy-to-use method to plug that knowledge gap,” said Dr Owen Tomlinson, co-author, and lecturer at the University of Exeter.
‘The Exeter Activity Unlimited Statement’ contains a list of recommendations and guidelines that are specific to exercise and complement other treatments for cystic fibrosis.
“We’re delighted that our Physical Activity Strategic Research Centre led by researchers at Exeter University has resulted in the development of this consensus document. We hope it will become a ‘one-stop shop’ of information on physical activity as a treatment for cystic fibrosis,” said Dr Lucy Allen, Director of Research at Cystic Fibrosis Trust.
One of the contributors to the study, Daniel Beever, lives with the condition himself. Daniel has said: “Despite advances in understanding and treatment, living with cystic fibrosis is still a challenge. Exercise is part of a significant and varied burden of care that can include many different tablets, nebulised medication, and physiotherapy.”
“This research is really important in highlighting what we do and do not currently know about the relationship between cystic fibrosis and exercise. Hopefully, it can lead to more effective, focused, and personalised approaches to exercise that, alongside other developments in care and treatment for cystic fibrosis, further help people with the disease to lead longer and healthier lives.”