Help us develop a questionnaire to track the daily impact of tummy symptoms for people with cystic fibrosis (CF)

Tummy symptoms such as bloating, pain and nausea are common for people with cystic fibrosis. These symptoms can be embarrassing and disruptive to everyday life.

Despite this, some questionnaires used in CF research are not actually CF-specific.

We need to change this.

 

It is important that we have a tool which can be completed quickly, on a daily basis. This will help researchers understand the daily impact of tummy symptoms for people with CF when it comes to studies, trials, treatments and ongoing care.

To check our daily tool is a good measure of tummy symptoms we will compare it with the gold standard. This is a questionnaire called the CFAbd-Score which asks you to recall symptoms over the last 2 weeks.

This will help us address the CF tummy issues that matter most to YOU.

Not just the things that clinicians and researchers think are important.

Hand holding an iPhone and using a colourful phone app
 

That’s why we’re developing CF Tummy Tracker

CF Tummy Tracker will be the first scoring system to allow you to track the daily impact of your tummy symptoms on a smartphone app.

By having people with cystic fibrosis - like you - involved in the design process, CF Tummy Tracker was designed to focus on the tummy symptoms that are most important to the CF community within clinical trials.

Longer term, we hope to make CF Tummy Tracker more widely available for use by the CF community.

 

Who can get involved?

The CF Tummy Tracker study is open to:

  • anyone with cystic fibrosis aged 12 or over*, from anywhere in the world

  • people with and without tummy symptoms

  • people with the ability to complete the questions in the study on your own, or with minimal help from someone else

    *If you are aged under 16 years, please talk to your parent or guardian about this study and ask them if they are happy for you to take part

You may especially like to get involved if you have an interest in:

  • using technology in cystic fibrosis research

  • gastrointestinal (GI) tummy symptoms in cystic fibrosis

 
 

Recruitment is now closed!

 

The app is quick and easy to download and register.  Most people are up and running in a couple of minutes.

93% of the participants have found it easy to sign up on the app!

The motif is the fastest, simplest way to track your daily symptoms.  In 30 seconds you'll be able to track 10 daily symptoms through the unique motif flower.

Complete the required inputs on the app every day for two weeks. Here’s what you’ll need to do:

  • On the first day you sign up you will be asked some information about yourself and your CF

  • You will be asked 10 questions every day for 14 days, and use the colourful ‘motif’ to select your scores

  • Day 1 and day 14:

    • Fill in an additional questionnaire about your tummy symptoms over the last two weeks

    • Fill in one additional question about how your tummy symptoms have been over the last 24 hours

  • Day 7 and day 14:

    • Give feedback on your experience of using the app 

Please read the participant information sheet if you are thinking of taking part.

uMotif app showing colourful shapes that represent different health scores
 

Thank you

Thanks to the 180 participants who completed our online survey to help us identify the questions that are most important to you to include within CF Tummy Tracker.

We have analysed these results and these have directly shaped CF Tummy Tracker by helping us to decide which questions were most important for you to include.

Laptop with a gut symptom survey shown on screen

Thank you to the 152 participants who have registered on the app!

Your input and feedback are greatly appreciated as they are critical to better understand how tummy symptoms impact you day-to-day and how we can best help you track them.

 
 

Got a question?

You can contact the research team at any point to ask a question.

Please email us at CFtummytracker@nottingham.ac.uk

 
 

Other things you might want to know

 

  • CF Tummy Tracker is being created through CARDS-CF (a Comprehensive Approach to the Relief of Digestive Symptoms in Cystic Fibrosis) - a research study led by Professor Alan Smyth at Nottingham University Hospitals NHS Trust and funded by National Institute for Health Research (NIHR).

    Professor Smyth is a Professor of Child Health and honorary paediatric respiratory consultant caring for children with cystic fibrosis.

    CARDS-CF also involves a number of paediatric and adult cystic fibrosis centres including those in Manchester, Leeds, King’s and the Royal Brompton who all have experience of caring for people with CF and clinical trials in CF.

  • If we don’t do this study and successfully develop a CF-specific tummy questionnaire:

    Researchers would continue using tummy symptoms scoring systems that aren’t as relevant to cystic fibrosis. This may mean they don’t capture insights into things that feel important to people with CF.

    By having a CF-specific scoring system, we hope that more researchers will use it, and their insights can therefore be more easily compared (versus if they were all using different, less relevant measures). A standard outcome like this means trials can be compared and combined.

  • As well as being CF-specific, CF Tummy Tracker is different because:

    • it uses a digital app for a better user experience and improved future-proofing

    • it can be used daily (where most questionnaires are typically over one week or more)

    • As well as tracking symptoms, it tracks the IMPACT and BURDEN of symptoms to people with CF (rather than making assumptions about how much things affect you based on symptoms alone)

    • it will involve fewer - and more specifically chosen questions (with the CF community) - for less burdensome monitoring

  • Yes. We might use these phrases interchangeably to paint a picture of what we are trying to develop and the uses it can have.