“The results will drive the research agenda in CF for the next five years”: Zoë on why the QuestionCF project matters
Tell us about having twins with CF
My daughter Isobel had meconium ileus when she was born, and she required several operations to correct that. It was at this point we knew that she might have CF. A blood test confirmed the suspicion. They then tested her twin brother Alex and confirmed that he had CF too.
I was a new mum, not only did I have these two babies, but they had additional needs. I couldn't feed them without giving them Creon. They needed physiotherapy and I only had one pair of hands! I would lie in bed every morning and think to myself, ‘who's coming to help me today’ – it was a really tough time.
How did you first become interested in CF research?
I went to a Cystic Fibrosis Trust parents conference when the twins were about two. I remember Professor Jane Davies giving a talk about CF research and everyone around me was madly scribbling notes. And I wasn’t, I had no idea about research. Until that point my focus had been about doing everything the CF team told me to do to keep my children well.
It spurred me on to get up to speed. Another CF mum was a nurse and she really helped me by pointing out what to read. Within a few weeks I had learnt that CF research could really impact on the life of my kids, other people with CF, and the kids not yet born with CF.
When did you start becoming more actively involved in CF research?
The children got invited to participate in the Torpedo trial, which was all about identifying whether nebulized or IV antibiotic were as effective as each other for treating the first infection with the CF bug Pseudomonas aeruginosa.
The childrens’ doctor Professor Alan Smyth told me that they were struggling to recruit people to take part. There was a real mismatch between what I was reading online in chat groups and the CF team’s understanding of why people weren’t coming forward to take part, so I got involved.
I looked at how they were talking about the study and why it was needed, and really thought about how to explain it better - better marketing basically! I was wearing two hats really – sharing the parent perspective, but also a communications perspective too.
My involvement in CF research studies has kind of grown since then. I became quite active on Twitter talking about CF and research related topics, and then I was invited to join the Trust’s Research Grant Review Committee.
Why do you think QuestionCF is important?
When I got involved in the first QuestionCF study to identify the research priorities of people with CF, I knew that the CF community would want to have their say – and they did. There was a great response. The CF research priorities identified had a couple of surprises, in particular relieving gastro-intestinal symptoms was the second highest priority. On the whole they weren’t a massive move away from what researchers were working on before, but I think it's really helped them focus on what people really want to be researched.
The top 10 research priorities didn't just come from people with CF and their families, it came from everybody in the community - clinicians, healthcare workers and CF teams. If a researcher goes to a funder and says ‘our research project addresses number 4 of the top 10 priorities’, I think they are far more likely to receive funding than if there's no identification of the community’s research priorities in what they want to do.
Do you think the research priorities have made a difference to the twin’s care?
Yes, because they're currently part of the CF STORM research study about reducing their treatment burden. The study was specifically set up to address the top CF research priority from QuestionCF. As far as they're concerned research is just part and parcel of the condition, they've always been involved in it.
The twins know what questions they want to ask - they completed the first survey of the QuestionCF project themselves. They selected the questions from the current priorities and then they also submitted their own questions.
What would you say to encourage someone to take part in survey two of QuestionCF?
This stuff really makes a difference. The results will drive the research agenda in CF for the next five years. People should bring their personal experience with CF when they're doing the survey. It's that lived or work experience that we need to guide the questions going forward. You don't have to have completed the first survey to take part in the second.
What difference do you hope that research can make for your children's future?
I want their future to be that they live their life with the rigour of CF as a dim and distant memory – and I think that community-driven research will get them there.