Experts join forces to create a gold standard document to help people with cystic fibrosis

Reviewed by Emily Henderson, B.Sc.Sep 7 2022

World leading experts have joined forces to create a gold standard document to help people living with Cystic Fibrosis.

The Exeter Activity Unlimited Statement is a 24-statement evidence-driven document designed to assist health professionals in determining the right activity and exercise plan to suit individual needs of people living with cystic fibrosis.

Cystic Fibrosis is an inherited condition caused by a faulty gene that affects the entry and exit of salt and water in cells. It results in the accumulation of sticky mucus in the lungs and digestive system, leading to a range of challenging symptoms. While there is no cure for cystic fibrosis, a wide range of treatment including physical activity and exercise are recommended to manage the condition. There are approximately 11,000 people living with Cystic Fibrosis in the UK and approximately 100,000 people worldwide.

The promotion of physical activity for people with complex medical conditions is not usual, although evidence shows it to be effective in disease management. 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."

Professor Craig Williams, Lead Researcher and Professor of Pediatric Physiology and Health, University of Exeter

In 2016, Cystic Fibrosis Trust awarded a £750,000 grant towards the development of a comprehensive strategy that will afford people living with cystic fibrosis an individualized activity and exercise routines. The international, multidisciplinary grant was led by researchers at the University of Exeter.

The Exeter Activity Unlimited Statement, published in Chronic Respiratory Disease, consists of recommendations and guidelines which are specific to exercise and complement other aspects of disease management.

Dr Owen Tomlinson, co-author and lecturer at the University of Exeter, said: "Research has shown that there is a lack of confidence and understanding in how to utilise exercise for management of cystic fibrosis, therefore, we hope that these resources can provide an easy-to-use method to plug that knowledge gap."

Daniel Beever, researcher and co-author of the study, lives with cystic fibrosis. He was one of the participants in the consensus meeting.

Daniel 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, nebulized 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 personalized approaches to exercise that, alongside other developments in care and treatment, further help people with cystic fibrosis to lead longer, healthier lives."

Dr Lucy Allen, Director of Research at Cystic Fibrosis Trust, said: "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 in cystic fibrosis for CF teams and people with CF they support.

"Our Strategic Research Centre (SRC) awards are a multidisciplinary approach to advancing our understanding of cystic fibrosis and knowledge of how to treat it. The Physical Activity SRC brought together physiologists, psychologists and sports scientists to understand how physical activity can more effectively be prescribed for people with cystic fibrosis."

The Exeter Activity Unlimited Statement involved 39 collaborators from the UK, USA, Canada, Australia, Ireland, Greece, Chile, France, and the Netherlands, and including a mix of academics and clinical professionals, representing 43 different institutions.

The study is entitled 'The Exeter Activity Unlimited Statement on Physical Activity and Exercise for Cystic Fibrosis: Methodology and results of an International, multidisciplinary, evidence-driven expert consensus', and is published in Chronic Respiratory Disease.