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ASPECT-PCD Study Update

Nov 28, 2023

Lynne tells us: “I wanted to share some information with you about some research I’m doing with children and young people with PCD. It’s called the ASPECT-PCD study, which is the short name for Assessing personalised airway clearance techniques in PCD. Airway clearance techniques are what some people call chest physio.”

About Lynne:

Lynne Schofield is a physio at Leeds Children’s Hospital. She’s worked with young people with PCD since 2006, first in Bradford and then she moved into the North of England PCD team when it started in 2013.

Young people with PCD are asked to do their chest physio every day. At the moment there isn’t very much information on what happens in the lungs when someone with PCD does their physio. Lynne has always thought about this when she sees her patients as she understands that doing physio takes a lot of time and energy.

What Lynne has been doing:

Lynne has been working on developing her research idea for a number of years and after lots of hard work, she received money (funding) to get started! She tells us she has been really lucky to have help from the charity PCD Support UK, young people with PCD and their parents (her PPI members), the other PCD team members and lots of other clever people!

Lynne started her project back in April 2021 and has been working hard, learning about how to do research well. She has been given approval to start the project by the hospital and by NHS ethics, a panel which checks each research project to make sure it is fair and safe.

Other people have already written and published work about choosing different airway clearance techniques for different people. Lynne spent time finding what has already been done, reading this and pulled this together into a type of report called a scoping review. The next steps with this are to make some final changes before sending this through to the editor of a journal, aiming to be published in 2022 so that people can read about what she has found.

Lynne has also met with the physios at the different PCD centres to find out more about how they choose what advice to give their patients. She is now looking at what the physios said to find where there are things that are similar and things that are different. Again, she will write this up into a report and send it to be published to share what she has learnt. Lynne’s PPI members have looked at the work she’s doing and told her what is good and what needs to change.

What’s next?:

Lynne tells us “I’m excited to get started with the next part of my project in the new year. This is where we will be using a special type of scan called an MRI to understand what happens inside the lungs when young people with PCD do their physio. The MRI is great as it can take pictures of the lungs without any radiation so it’s really safe and doesn’t hurt at all.

“The biggest thing I’ve learnt is how important it is to have people around you to teach you things and give you support when things are hard. It’s been a big change to not be doing my normal physio job at the moment, I do miss my patients and the people I normally work with, but I’m excited to be doing my project, I look forward to telling you more about it in the future.”

Thank you for the update Lynne! We are excited to hear more!