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Giving cystic fibrosis patients the tools to stay well

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21 January 2022

Giving cystic fibrosis patients the tools to stay well

REF 2021

This case study was included as part of the Research Excellence Framework for 2021:

By Professor Madelynne Arden, Professor of Health Psychology

Friday 21 January • Viewing time: 1 minute

People with cystic fibrosis can struggle to manage complex treatments alongside everyday life. Our researcher is helping them find balance.

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.

A nebuliser and medicine on a table, and a woman holding a mobile phone in the background
The CFHealthHub app allows patients to view their treatment data, set goals and track progress.

Healthier, happier patients

After a 12 month trial, we carried out an assessment and interviews. We found that patients using CFHealthHub had taken significantly more treatments than those receiving normal care. It was particularly effective for people who started the trial with low to medium rates of adherence, leading to 18% more treatment-taking than usual care.

What’s more, patients told us they felt more confident and less stressed about taking their medication. The tools helped them to develop new habits and plan treatments more effectively, so they felt like less of a burden. This meant people could manage their condition while getting on with everyday life and the things they enjoyed.

One patient said, “It's helped me find a pattern, which I didn't have before. It’s drastically improved my using of treatments, my overall health, and my understanding of CF.”

When the trial finished, patients continued using CFHealthHub. In total, over 1400 patients have joined the system.

Transforming care

As part of the project, we also trained health professionals to support patients using the CFHealthHub tools. This improved their knowledge of treatment adherence and led to a more person-centred approach to care.

Clinicians said that using CFHealthHub during appointments helped them understand why individual patients might be struggling to cope with treatment, and to make decisions based on those needs. They also noticed that it opened up honest, two-way conversations. This was something echoed by patients, who felt more engaged in their care.

Now, more than 400 clinicians across the UK are using CFHealthHub as a regular part of their practice.

Stronger services

CFHealthHub has been rolled out by NHS England, and is in use in the majority of CF centres in the UK. Not only does this mean more patients will get the support they need to stay well, it also eases pressure on CF services so resources can be used where they’re needed most. By reducing costly hospital visits and medicine wastage, it could save the NHS £2.5 million every year.

Our work also meant CF services could continue to support patients when they were asked to shield during the Covid-19 pandemic. The National Institute of Health and Care Excellence recommended CFHealthHub as a way of delivering remote care, with virtual clinics supporting people and providing them with behaviour change tools to self-manage their condition while in isolation.

Looking forward

Following its success with adult patients, we’re now adapting CFHealthHub for children and young people, so they can build strong treatment habits from an early age. There’s also been international interest from CF centres in Europe and the US.

It’s been rewarding to see the impact CFHealthHub has had so far. Ultimately, I hope it will make life easier for people living with CF all over the world. By giving them the right tools to manage their treatment, we can help them stay healthy and happy for as long as possible.

Staff

Madelynne Arden

Professor Madelynne Arden

Professor of Health Psychology; Director of the Centre for Behavioural Science and Applied Psychology; Director of the Behavioural Science Consortium

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REF 2021 Research Excellence Framework logo

About this project

Explore the people and organisations behind this research, and find related publications by the research team.

Related courses

Our teaching is informed by research. Browse undergraduate and postgraduate courses with links to this research project, topic or team.

Get in touch

Find key contacts for enquiries about funding, partnerships, collaborations and doctoral degrees.

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