Cystic fibrosis (CF) is a genetic condition that affects 10,500 people in the UK. It causes mucus to build up in the lungs, leading to severe breathing problems and recurring infections. The average life expectancy for people with CF is 31 years.
Although there is no cure, treatments can help people control their symptoms and avoid lengthy hospital stays. Adult patients are usually prescribed three treatments a day, taken through a nebuliser, which delivers medicine directly to their lungs as a fine mist. The problem is, only 36% of these are taken.
That’s where my work comes in. As a health psychologist, I’m interested in helping people make positive changes to their behaviour for better health. In this case, how can we support CF patients to stick to their nebuliser treatments and stay well for longer?
My research in this area informed the development of CFHealthHub — a personalised web platform and app that empowers patients to manage their medication more effectively and lead healthier, happier lives. It also allows health professionals to have more supportive conversations with patients to help them make changes.
CFHealthHub has now been rolled out by NHS England to benefit thousands of people across the country.
What are the barriers?
To help people with CF stick to their treatment, we first needed to understand the barriers.
We started by giving a group of patients special nebulisers that recorded their treatments electronically over six months. Using this data as a prompt, we then interviewed them about the things that had affected their usage.
Our conversations showed many different factors at play. For example, as nebuliser treatments have long-term rather than instant effects, people can’t feel them working. Some patients also told us they didn't know how the medication was helping their condition. Both of these things made it difficult to find the motivation to carry on taking treatments.
Another problem was planning. Like all of us, people with CF want to lead normal lives, have fun and be spontaneous. This meant fitting in multiple nebuliser treatments every day — alongside other treatments such as enzyme supplements and airway clearing exercises — could be a real challenge. Understandably, we also found that some patients missed treatments due to the tiredness and stress of living with a chronic illness.
It was clear that a one size fits all approach wouldn’t be suitable. We needed a flexible solution that could tackle a range of complex treatment barriers and meet individual patient needs.
A new toolkit
Working with patients and health professionals, we developed CFHealthHub — a web platform and app designed to help people with CF make positive changes to their treatment habits.
It features user-friendly tools that allow patients to view their treatment data in real-time, set goals and track their progress. There’s also a social schedule to help patients fit treatments around everyday activities, and a motivational area with animations explaining how different treatments work.
One of the unique things about CFHealthHub is that it’s completely personalisable. When registering for the app, patients complete a questionnaire about their lifestyle and any specific barriers to treatment-taking. The tools are then tailored to meet those needs.
To underpin the digital resources, we also created a manual and training programme so health professionals could use CFHealthHub alongside their patients.