In its first guideline on cystic fibrosis, NICE recognizes that people may need to travel long distances for routine monitoring. This could impact on a person’s daily life, the guidance says.Using phone or video messaging to monitor someone’s condition, also known as telemedicine, is already being used in some clinics, NICE says.
It may require patients to be issued with testing equipment, such as spirometry, at home which would incur a small cost. However, this would be offset by the reduced use of busy NHS clinic space.
NICE says telemedicine is not suitable for all people with cystic fibrosis and should only be used to routinely monitor people who are clinically stable.
Professor Martin Walshaw, consultant in General and Respiratory Medicine at the Liverpool Heart and Chest Hospital NHS Foundation Trust and chair of the guideline committee, said: “People with cystic fibrosis have very complex health needs and may have to visit specialist clinics or hospital on a regular basis. This may involve traveling long distances.
“If they are stable, the guidance asks specialist teams to consider monitoring suitable individuals over the phone or through video messaging. This means they would not have to spend time traveling to their clinic if they did not need to. This time could be better spent living life the way they want.”
The guidance also makes wider recommendations on how services should be delivered, including how social workers can support people to adjust to their condition long-term, such as help taking medicines every day.
Specialist clinics should also plan treatment that takes account of cross-infection, the guidance advises. Bacteria can be easily transmitted from one person with cystic fibrosis to another. This can cause infections which can become chronic or prove fatal.
Cystic fibrosis is an inherited condition which affects the lungs and digestive system. They can become clogged with thick, sticky mucus which causes problems with breathing and digestion. The condition affects around 10,400 people in the UK, according to the Cystic Fibrosis Trust.
Professor Mark Baker, director of the center for guidelines at NICE, said: “Our guideline sets out how to diagnose, treat and support someone with cystic fibrosis so they can live as full a life as possible. Reducing the burden that some patients may experience through regular check-ups that could be done at home could make a positive difference to their lives.”
Nick Medhurst, Head of Policy at the Cystic Fibrosis Trust, said: “The NICE guideline is a great tool to identify evidence-based best practice. We hope it will be a useful guide that helps people with cystic fibrosis and the multi-disciplinary team to make decisions together.”