Updating the consensus document: standards for the nursing management of cystic fibrosis

Abstract

Objectives: This is the second edition of the 'Standards for the Nursing Management of Cystic Fibrosis'. The aim was to modernise the consensus document (first published in 2001) to assist CF specialist nurses (and CF teams) with the multiple, complex challenges in CF care, and develop contemporary guidance on best practice in person-centric care and treatment. Method(s): A working group comprising both paediatric and adult CF nursing professionals from the UK and Ireland (Cystic Fibrosis Nursing Association, CFNA) conducted a comprehensive appraisal of the 2001 guidelines to revise and develop a document that reflects modern advancements in treatment and the nursing role. The draft guidelines were circulated to expert clinicians and patient/parent representatives from the Cystic Fibrosis Trust's Clinical Advisory Group (CAG) prior to publishing. Crucially, the guidelines were formed using methods of Co-production with patients from the CF community and with support from Cystic Fibrosis Trust. Result(s): The document, published in January 2025 by the Cystic Fibrosis Trust, provides guidance on the role of the CF clinical nurse specialist within each area of care, and recommendations for audit, based upon expert opinion and up-to-date evidence-based practice. It recognises the evolving role and advanced level of practice, whilst reinforcing how the CF CNS is pivotal to the care experience of people with CF. Conclusion(s): Developments in CF care and treatment have led to improved outcomes and better quality of life. The guidelines will support CF nurses to deliver an optimum level of care throughout a person with CF's lifespan. Copyright © 2025