MoreLife Factors that influence diet and physical activity behaviours of adults living with cystic fibrosis and overweight on Cystic Fibrosis Transmembrane Conductance Regulator Modulator Therapies; a mixed methods study (The More Life with CF Study)
NIHR supportRecorded as supported by this research centre
PeriodMar 2025 — Sept 2025
In plain English
AI plain-English summary
For decades, people with cystic fibrosis were told to eat as many calories as possible—now, new drugs are making some of them overweight, and no one knows how to help them change their diet. This matters because the high-calorie diet that once kept people with CF alive is now putting some at risk for heart disease, diabetes, and cancer. The new CFTR modulator therapies treat the underlying condition, but they also reduce the body’s energy needs. Patients and clinicians lack evidence-based guidance on how to transition to a lower-calorie diet and increase physical activity. This study will fill that gap by tracking what 60 adults with CF and overweight actually eat and how active they are, then interviewing 20–30 of them about what shapes those habits. If this research succeeds, it will produce the first weight management programme designed specifically for people with cystic fibrosis. That programme could prevent additional chronic diseases in a population already managing a life-shortening condition. The findings will also help clinicians update decades-old dietary advice that no longer fits the reality of CF care.
View original technical description
Cystic Fibrosis (CF) is a condition that some people are born with. It causes lung failure, digestive problems, and a shorter life expectancy. People with CF (PwCF) are advised to eat a high calorie diet. This diet has helped PwCF to become well-nourished and live longer. However, some PwCF are now becoming overweight. This is because new treatments called Cystic Fibrosis Transmembrane Conductance Regulator (CFTR) therapies are helping to treat CF, and reducing the need for a high calorie diet. PwCF now need to adopt a diet lower in calories and become more active. This will help them to manage their weight and reduce their risk of developing additional health problems such as heart disease, diabetes, and cancer. This study aims to find out what people living with cystic fibrosis and who are overweight eat, how active they are, and what influences their eating and activity habits. To do this we will ask a group of 60 people living with CF and overweight who attend adult CF centres at Hospitals in Birmingham and Sheffield to record what they eat for 4 days, using a smart phone app or paper food diary. They will also wear an activity monitor on their wrist for 2 weeks. We will then invite a range of 20-30 participants in terms of age, sex, and health, to be interviewed about what influences how they eat and how active they are. The themes that emerge from the interviews and the food and activity data will help us to understand what the challenges are in adopting a healthy diet and being more active for PwCF. These results will be used to design, with PwCF a weight management programme specifically for PwCF. This research project is funded by the NIHR as part of a Doctoral fellowship.
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