Improving exercise provision for people with cystic fibrosis: Tell us your experiences

Exercise can provide many health benefits for people with cystic fibrosis. Since the introduction of CFTR modulator therapies, there have been significant improvements reported among those taking the therapies. These include increased exercise capacity and pulmonary function, resulting in a positive effect on health-related quality of life. 

Staying active should be part of routine management of CF at any age. NICE (National Institute for Health and Care Excellence) guidance¹ and Cystic Fibrosis Trust’s own physiotherapy guidelines² recommend that CF centres should provide regular advice, education, and support on physical activity irrespective of age and disease severity. With the introduction of drugs like Kaftrio, the role of exercise and physical activity will probably become even more relevant and important in the management of CF.

In the UK, exercise services within CF centres are diverse in terms of staff qualifications, expertise, and training. Physiotherapists often undertake exercise delivery on top of other clinical demands (eg respiratory care, musculoskeletal review, and clinic provision) as well as research activity.

With the improvements associated with CFTR modulators, such as increased life expectancy and reduced exacerbations, but also effects such as increased weight and general frailty associated with aging, there is a need to recognise exercise as an independent area of treatment. Several CF centres in the UK have added non-physiotherapy healthcare professionals to their CF teams to support with the role of exercise provision. These roles vary not only in title, training, and qualifications, but also in responsibilities and expectations, lacking uniformity.

In 2022, Cystic Fibrosis Trust launched the first ever Cystic Fibrosis Exercise Practitioner Fellowship. Supported by an experienced steering group comprising members of the CF & Exercise Network and the Associate of Chartered Physiotherapists in CF (ACPCF), the fellowship was set up to help standardise and promote the role of the exercise practitioner in CF in the UK.

One aim of the fellowship is the development of training resources which will ultimately improve the provision of exercise services offered across the CF community. These resources will be based upon the needs of the CF community – both people with CF and healthcare professionals – and will enable the delivery of specialist exercise interventions to everyone with CF.

To achieve this, two surveys have been designed to explore the current exercise provision out there and capture the experiences of people with CF and their healthcare professionals in UK CF centres. One survey is aimed at adults with CF and another one is aimed at the healthcare professional actively involved in the delivery of exercise within the CF team.

By taking part in these surveys, people with CF and their healthcare professionals can have their voice and experiences heard on this important topic. It is also an opportunity to influence the design of the training resources to improve the lives of people with CF.  While the survey focuses on adults initially, we hope that in time we will be able to expand the training to include exercise provision for children, and specialist modules to address specific needs.

The surveys should take no more than 10 minutes to complete. We’d be really grateful if you could take part and help us improve exercise provision for everyone with cystic fibrosis.

Survey for people with CF

Survey for healthcare professionals

*Please note we only need one person from each CF Centre to complete the survey

1 Cystic Fibrosis Trust. Standards of Care and Good Clinical Practice for the Physiotherapy Management of Cystic Fibrosis (2020) https://www.cysticfibrosis.org.uk/sites/default/files/2020-12/Standards%20of%20Care%20and%20Good%20Clinical%20Practice%20for%20the%20Physiotherapy%20Management%20of%20Cystic%20Fibrosis%20Fourth%20edition%20December%202020.pdf

2 NICE (National Institute for Health and Care Excellent) Cystic fibrosis: diagnosis and management (2017) https://www.nice.org.uk/guidance/ng78

Cystic fibrosis (CF) is a genetic condition which causes sticky mucus to build up in the lungs and digestive system. It affects more than 10,800 people in the UK. One in 25 of us carries the faulty gene that causes it, usually without knowing.

Since 1964, we've supported people with cystic fibrosis to live longer, healthier lives - and we won’t stop until everyone can live without limits imposed by CF.