Information you can trust: Consensus documents for CF health professionals
What exactly are consensus documents?
Consensus means when people agree. The consensus documents we produce contain recommendations on the best treatment and care for people with cystic fibrosis. These are written and agreed upon by expert health professionals, scientists, and people in the CF community. Our consensus documents are sometimes also referred to as clinical guidelines.
Why do we produce them?
The main aim of consensus documents is to provide clinicians and services with guidance to make decisions about the best treatment and care for people with CF. This helps to work towards all people with CF receiving the same standard of care, no matter where they live in the country. Consensus documents are targeted at health professionals working in CF care, but can also be helpful for people with CF and their families to understand the standards of care they should expect.
How do we produce them?
An expert group is formed to write the consensus document. The group is made up of specialist CF health professionals and scientists with experience and expertise specific to the topic of the consensus document. The group also includes representation from people with CF and parents of children with CF. Members of the group review what evidence exists on the topic and assess the quality of that evidence. This helps them to make recommendations for clinical practice. Sometimes, there is little evidence on a topic, or the evidence is low quality, which can make it difficult to know what is best practice. In these cases, the group uses their experience and expertise to consider the evidence and agree on recommendations. The consensus document is reviewed at different points in the production process by other experts and people in the CF community outside the expert group to make sure it is accurate and relevant.
What kind of topics do the consensus documents cover?
We publish consensus documents across a range of key and emerging topics relating to CF care and treatment. The Trust’s first consensus document was produced in 2001, setting out the standards of care for the nursing management of CF. Since then, consensus documents have been produced for managing CF diabetes, infection prevention and control, pharmacy services, laboratory services, managing nutrition and physiotherapy treatment.
Over time, developments in research and practice can change what we understand to be best treatment and care in CF. This means that consensus documents may need to be updated with new evidence to make sure they are accurate and reflect current best practice. We have recently updated the following consensus documents:
- Management of Cystic Fibrosis Diabetes: This document summarises the current clinical approach to CF diabetes, to help CF teams navigate the challenges of blood sugar control. The updated guidance reflects new evidence, changes in the screening and management of CF diabetes, and the impact of CFTR modulators. The document replaces the name ‘CF-related diabetes’ with ‘CF diabetes’ to better describe the direct relationship between CF and diabetes and to emphasise the importance the condition and its impact.
- Laboratory Standards: This document provides guidance for diagnostic microbiology laboratories to reliably detect CF lung bugs. Data and evidence from the last 12 years, since the first edition was published, was used to update recommendations. The document has a new chapter that gives an overview of the developments in research that have impacted our knowledge of CF microbiology and the direction of future research. It also contains new information about the role of the CF microbiologists within the CF multidisciplinary team.
- Pharmacy Standards: This document provides guidance for pharmacy services and CF specialist pharmacists to support effective treatment plans for people with CF. The document includes recommendations for how CF specialist pharmacists can work with other healthcare professionals and individuals with CF to make decisions about treatments and design treatment plans tailored to maximise health outcomes.
What consensus documents are we working on next?
We are currently working on a new consensus document for psychology and social work provision in CF. We have also started forming expert groups to update our consensus documents on general standards of care in CF, infection prevention and control, and antibiotic treatment.
You can read all our consensus documents here.
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.
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