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Tell us more about yourself and the author team.
We are a team from the internationally recognized Children’s Health and Exercise Research Centre at the University of Exeter. We are an interdisciplinary team of researchers with a focus on the health and well-being of children via exercise testing and training and physical activity measurement and promotion. We work with elite youth athletes, the general school-aged population, and children with complex medical conditions, including congenital heart disease, cerebral palsy, and cystic fibrosis.
What is the story behind your study?
It is well known that a higher fitness level is beneficial for patients with cystic fibrosis, and the studies to characterize this use a ‘percent of predicted’. However, there is a lot of variability in how studies have characterized the ‘percent of predicted’ in the past. We have had clinical collaborators ask us which is the right one to use. We wanted to know what everyone else was using to help us make this particularly important decision. Hence, we undertook this scoping review to evaluate the current landscape in cystic fibrosis.
In your own words, what did you find?
Lots! Unfortunately, not much was reassuring for clinical practice. We identified 170 studies as a result of our search, which used 34 different ways of displaying data as a ‘percent of predicted’. This alarming variance indicates that many academics and clinicians may be using different reference equations to come to different conclusions on the same data. An equally worrying statistic was that one-third of studies failed to explicitly detail in their methodology which equations they used, and this lack of transparency can leave studies open to misinterpretation.
What was the main challenge you faced in your study?
There were a lot of studies for us to review and extract data from, and it took us a long time to do it all. We included a total of 170 studies, which is far more than other scoping and systematic reviews. However, this did mean we ended up with lots of data and real confidence in the final message.
If there is one take-home message from your study, what would that be?
To be open and honest with reporting of references and sources of data. As we work towards a global agreement on how we describe and derive ‘percent of predicted’, we will need still need to be clear with how we report such techniques in the interim, as even the best reference values have errors in their predictions. Therefore, knowing which was used is essential, allowing a reader to understand how data were interpreted.