How we've updated clinical guidance on CF diabetes (CFD)

Blog - 30/01/2023

As we work towards making our information resources as useful and relevant as possible for everyone with cystic fibrosis today, we’ve updated our consensus document on The Management of Cystic Fibrosis Diabetes. We published the new guidance at the end of 2022. We’re really grateful for all the help we’ve had from people in the CF community and healthcare professionals that look after people with CF. We hear from Paula Dyce, the Chair of the Working Group for the Diabetes consensus document, to find out more about some of the important changes to the document.

To learn more about how we produce and update consensus documents, read our blog on the topic.

Paula My name is Paula Dyce and I am an Advanced Nurse Practitioner for Cystic Fibrosis Diabetes at the Liverpool Heart and Chest Hospital. I chaired the working group that updated the recently published Cystic Fibrosis Trust consensus document ‘Management of Cystic Fibrosis Diabetes’ which gives CF professionals guidance on how to treat people with cystic fibrosis diabetes (CFD). The working group comprised a team of professionals within this field, who between them have a wealth of experience and knowledge regarding CFD.

The working group is proud to have been involved in the updated guidelines for CFD and thank the Cystic Fibrosis Trust for supporting the consensus guidelines during an unprecedented and difficult few years. The update of this document, which began in 2019, experienced significant challenges due to the pandemic. The document continuously evolved to reflect real-time changes in CF care and treatment and the impact of CFTR modulators.

The original version had the title ‘CF-related diabetes’, a term used since the late 1990s. Some may wonder what has happened to the word ‘related’ in the updated guideline. As a group, we felt that the term ‘related’ did not reflect the direct relationship between CF and diabetes. We felt it undervalued the importance of this condition and underestimated its complexity. We have therefore adopted the term cystic fibrosis diabetes which we hope better reflects the nature of the condition and the significant impact it has on the lives of people with CF.

The document continuously evolved to reflect real-time changes in CF care and treatment and the impact of CFTR modulators.
Paula

We gathered information and best practice from throughout the UK and worldwide to update and clarify the guidance, which was first published in 2004. Coming to a consensus (where everyone agrees) has been a huge challenge, due to limited evidence in some areas and different approaches at CF centres across the UK. We have attempted to gather the most up to date evidence and information on best practice, to help CF teams navigate the multiple factors involved in the challenges of glucose control. Individualised care is always at the forefront of treatment and management plans; therefore, these are guidelines which individual CF centres can adapt to the needs of their patients and services.

Alongside our work on clinical guidance for CFD, we are now updating our diabetes information for the CF community. Keep an eye on our social media channels for any updates.

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.