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Breaking down barriers to effective cystic fibrosis treatment

In the biggest cystic fibrosis trial in the UK, NIHR-funded research has shown that a personalised web platform, CFHealthHub, could markedly increase adherence to treatment.

Published: 03 January 2024

Only a third of people adhere to their cystic fibrosis treatment

Cystic fibrosis is a genetic condition affecting more than 10,600 people in the UK. It can cause a damaging build-up of thick, sticky mucus in the lungs that results in serious breathing problems. People take various medications to ease these symptoms, and adults are usually prescribed three daily treatments that are inhaled through a nebuliser. Collectively, these medications cost the NHS around £30 million per year. Taking these medications correctly, or ‘adhering’ to treatment, is linked to better overall health and fewer hospital admissions for emergency care. Despite this, only a third of people adhere to their prescribed treatment.

Supported by a £2.5 million award from NIHR, a research team from across the UK set out to improve treatment adherence with their newly developed web platform and app, CFHealthHub.

Developed alongside a panel of people with cystic fibrosis, CFHealthHub supports people to manage their own health. By tracking the number of treatments taken using a Bluetooth-enabled nebuliser, people use an app to monitor their medication and share data with their doctors.

Supporting patients to manage their care

19 centres from across the UK enrolled 607 adults with cystic fibrosis onto a year-long trial of CFHealthHub. Half of the participants received usual care only, while the other half used CFHealthHub to manage their medication use.

By the end of the trial, patients using CFHealthHub had taken considerably more treatments than those receiving normal care. It particularly helped people who began with a low or medium level of adherence. In these groups, treatment-taking increased by a fifth more than those receiving usual care.

"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 cystic fibrosis".

Comment by a trial participant with cystic fibrosis

Many of the participants continued using the platform after the trial ended. The trial’s results were published in the journal BMJ Thorax.

Transforming care around the country

The clear success of the trial supported NHS England’s decision to roll out CFHealthHub across the country as a learning health system and community of practice, where it now benefits over 15,000 people with cystic fibrosis. More than 50% of adult cystic fibrosis units, including over 100 clinicians, now use it in everyday practice.

“The CFHealthHub community of practice meets weekly to share learning in order to continuously improve support empowering self-care,” said Dr Wildman, a consultant in respiratory medicine and adult cystic fibrosis who was involved in the trial.

Alongside its healthcare benefits, wide engagement with the platform could save the NHS around £2.5 million every year through fewer hospital visits and wasted medicine.

Its benefits were further highlighted during the course of the Covid-19 pandemic, when NICE recommended using the platform as a safer way for people to receive care while shielding at home.

The trial’s evidence has also raised awareness of the platform beyond the UK, bringing interest from cystic fibrosis centres in Europe and the US. Here in the UK, it is already being adapted for children and young people to give them the best treatment and quality of life from a young age.

The study was funded by the NIHR Programme Grants for Applied Research.

More information about the study is available on the NIHR’s Funding & Awards website.

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