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Using apps in CF research
Monitoring lung health at home
In 2011, researchers at the University of Cambridge and Papworth Hospital, led by Professor Andres Floto, began to explore the potential benefits of monitoring lung health at home for people with CF. With funding from the Trust, the team undertook a national study across seven adult CF centres called SMARTCARE. The study looked at practical things such as the time it took to take measurements such as FEV1 and weight and record them. It also looked at whether getting more frequent updates on their health affected the overall well-being of people with CF who took part.
Following agreement from participants, the health data collected was analysed by researchers to develop an artificial intelligence (AI) algorithm that could potentially predict future clinical deteriorations (acute exacerbations) around ten days earlier than normal. The team are now testing how effective this AI predictive algorithm is in improving the quality of life in a clinical trial (funded by LifeArc and NIHR) called ACE-CF.
SMARTCARE led to the development of a programme called Project Breathe, funded by the US Cystic Fibrosis Foundation, which aimed to explore whether, by sharing their home monitoring data of CF symptoms with their clinical teams, people with CF could have less frequent medical appointments and receive treatment for exacerbations earlier. They also tested (before the COVID pandemic) the introduction of virtual CF appointments rather than having them at their CF centres.
A key part of the programme was to ensure that the collection of the home monitoring data was as easy as possible. To help with this, the not-for-profit social enterprise company Magic Bullet became part of the research team. They designed the Breathe RM phone app that research participants could install on their own phones and use during the study. As digital technology has developed, the app has developed too – allowing lots more devices, such as spirometers and fitness wearables, to connect directly to it.
“The app is intended to help people with CF track trends in lung health and other CF-related symptoms, including blood glucose for those who have CF diabetes. Users can monitor their symptoms from the comfort of their own home," said Kirsty Hill, Director of Magic Bullet. “It's important to us that users own their own data. We are led by the CF community - so we would love people to download Breathe RM, tell us what they think and help us make it better.”
The Breathe RM app is freely available for people with CF to use to monitor their health on both the Android and Apple stores. You can learn more about the Breathe RM app online.
The app helps to motivate me to exercise or do physio...It turns constant CF monitoring from something overwhelming into a personal goal or fitness target
A user of the Breathe RM app
Collecting information about GI symptoms
We know that the question “How can we relieve gastro-intestinal (GI) symptoms, such as stomach pain, bloating and nausea?” is a top research priority for the CF community. In order to work out how to relieve GI symptoms, the researchers need to understand what symptoms people with CF have and which ones have the biggest impact on day-to-day life.
Researchers at the University of Nottingham are currently developing an app for monitoring GI symptoms called the ‘CF tummy tracker’. People were invited to test out the app for two weeks.
The app was created with a lot of input from people with CF, from testing out which symptoms to ask people about, to what the app was called. The plans were discussed in groups and also in one-to-one interviews.
“We wanted to know people’s thoughts on being asked to record their GI symptoms every day, whether people understand the questions we’re asking, and, of course, if we’re asking the right questions. The interviews we did with the CF community were so valuable! For example, we dropped some questions because although they were asking about common symptoms experienced, people felt they didn't have a big impact on quality of life,” said Dr Rebecca Calthorpe, Clinical Research Fellow at the University of Nottingham who is part of the team developing the app.
The app was simple to use and doesn't take too much time each day. It's very useful to be able to keep track of how my digestive symptoms have been and change, as it's not always easy to recall when it was worse or better.
Comment from CF Tummy Tracker participant
Researchers are not looking for any other people to test out the CF Tummy Tracker app; recruitment for this study has now closed.
Once the results of the study have been analysed and any adjustments made, researchers at Nottingham University hope that the CF Tummy Tracker app can be used to understand more about the causes of these symptoms and assess future treatments that could relieve them.
Read more about the CF Tummy Tracker app on the study website.
Past research, funded by our incredible supporters, has transformed the lives for many in our community. We’ve made some incredible progress. But we still have so much to do.
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