Updated UK physiotherapy standards for cystic fibrosis published

We're delighted to share that the fifth edition of the Standards of Care and Good Clinical Practice for the Physiotherapy Management of Cystic Fibrosis has just been published, updating the previous version from 2020.

The physiotherapy standards of care is the reference document that sets out standards for how physiotherapists across the UK support people with CF, from newly diagnosed babies through to adults. It covers a wide range of areas within CF physiotherapy, including:

•    airway clearance techniques
•    exercise and physical activity
•    inhaled medicines
•    sinus disease
•    musculoskeletal issues
•    pregnancy and parenthood
•    palliative and end-of-life care
•    and more.

It’s endorsed by the ACPCF and Cystic Fibrosis Trust.

Why do the physiotherapy standards of care matter?

Wherever you receive your CF care in the UK, these standards help ensure that the physiotherapy support you receive is safe, consistent and based on the best available evidence.

Every recommendation has been carefully graded according to the strength of the research behind it. Where evidence is limited, the standards include Good Practice Points instead. Good Practice Points are recommendations based on the collective clinical experience of specialist CF physiotherapists. ACPCF members reviewed the points through a series of surveys and agreed whether they should be included. This means the standards draw on both the available research and the shared judgement of CF physiotherapists across the UK.

What’s changed since 2020?

Since the previous standards were published, CF care has changed significantly.

CFTR modulators have changed the health and day-to-day lives of many people with CF, but not everyone can take or benefit from them. Importantly, the recommendations for people with CF who cannot take or benefit from modulators have also been fully reviewed and updated through the same rigorous process. This means the standards continue to support high-quality physiotherapy care, whatever treatment they receive.

Additionally, the standards contain two new sections relevant to people who don’t have a confirmed CF diagnosis: 

• CFSPID (CF screen positive, inconclusive diagnosis): guidance for infants whose newborn screening results don't give a clear diagnosis
• CFTR-related disorders: guidance for people with CFTR gene changes who do not meet the criteria for a CF diagnosis.

The updated standards also feature a section on Simeox®, a newer airway clearance device now being used by some CF centres.

These additions mean the standards now reflect both the changing treatment landscape and a wider range of experiences and needs among people receiving CF care. 

What does this mean for you?

The standards will shape the care you’re offered, the conversations you have, and the way your team keeps their practice up to date as the evidence and treatment landscape changes. The standards will be reviewed and updated regularly as CF care continues to evolve. 

We were so proud to be part of the team who worked on this update, and we hope it continues to support high-quality, evidence-based physiotherapy care for everyone with CF, wherever they receive their care.

Download the updated physiotherapy guidelines