ASPECT-PCD Study Update

ASPECT-PCD Study Update

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ASPECT-PCD Study Update

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!

Images of typical physiotherapy techniques including a girl using a nebuliser, two young women running together, and a young boy using a PEP device.
Get involved in physio research!

Get involved in physio research!

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Get involved in physio research!

This is an opportunity to help researchers develop new ways of empowering patients with their physiotherapy treatments for bronchiectasis.

 

Aim

Airway clearance techniques (commonly referred to as “breathing exercises”) are used to help people with bronchiectasis manage their daily symptoms by helping clear mucus from their lungs.

The evidence to date shows that there is no specific airway clearance technique that would be best for patients to perform. Many physiotherapists decide which airway clearance technique is best for their patients. There is little evidence that patients contribute to decisions on which technique they would like to use.

This is why researchers from Newcastle Hospitals want to know how we can support patients in actively engaging with their physiotherapist during consultations, on what airway clearance technique they feel is best for them.

 

Volunteer Criteria

You must be aged over 18 to take part. You must have a diagnosis of bronchiectasis or be a partner/spouse/carer of someone who has bronchiectasis.

 

What will I be asked to do?

You may be invited to participate in a virtual/video call and speak with a researcher. This should not last for more than 15 minutes.

You will be asked a couple of questions around how to improve patient’s participation during their physiotherapy appointments; mainly around their airway clearance techniques.

We are interested in the knowledge and opinions of people living with bronchiectasis and their family/carers.

 

When and where?

No specific date. The researcher will aim to be flexible with a time that suits you. This part of the research will finish by the end of January 2022.

 

What will I get in return?

You will be offered a £10 for video/telephone call. If a face-to face meeting is appropriate any reasonable travel costs will be reimbursed in addition to the £10.

 

What will my contribution lead to?

You will help shape what research looks at in bronchiectasis and make sure they are important and meaningful to patients.

If you wish to take part or have any questions, please email: [email protected]

 

About Paul: “I am a respiratory physiotherapist with a specialist interest in bronchiectasis and research. I’m currently undertaking a NIHR pre-doctoral clinical academic fellowship to develop my skills in research and clinical practice. I am developing my application for a competitive national clinical doctoral research fellowship. I am also the long-term conditions champion for the Association of Chartered Physiotherapists in Respiratory Care (ACPRC) in the UK.”

Your opinions about PCD research: looking for volunteers!

Your opinions about PCD research: looking for volunteers!

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Your opinions about PCD research: looking for volunteers!

Your opinions about PCD research: looking for volunteers!

Researchers from the University of Bern in Switzerland in collaboration with UK researchers and members of PCD Support UK are studying opinions of people with PCD on where should PCD research focus next. They are looking for parents of children with PCD (0-13 years old) and particularly for adolescents with PCD (14-17 years old) who are willing to have a 40min-1hr online chat about PCD research. For detailed information, and to get involved, please email Yin at [email protected]

PCD Live: The COVID-19 and PCD Study

PCD Live: The COVID-19 and PCD Study

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PCD Live: The COVID-19 and PCD Study

Join us on Monday 29th Nov to hear about the COVID-19 and PCD study with Dr Eva Pedersen.

 

What’s the talk about?

The COVID-PCD study was set up in Spring 2020 together with PCD support groups to follow people with PCD through the pandemic. During the past 18 months, more than 700 people with PCD from more than 45 countries have taken part in the study, with over 150 of them from the UK! The data collected through COVID-PCD has helped to find out how many people with PCD got COVID-19 and how severely ill they got.

The study continues and will answer important research questions about PCD that go beyond the COVID-19 pandemic.

Join us for the results of this ongoing study that you have been contributing to over this last 18 months!

Sign up here!

 

Who is giving this talk?

Dr Eva Pedersen is a postdoctoral fellow at the University of Bern and is originally from Denmark, where she studied Public Health and Epidemiology in Copenhagen. Eva has been working in the Research group of Claudia Kuehni, an expert in PCD research, since 2016, and Eva started working on PCD research in March 2020.

Sign up here!

PCD Live: “That’s rare, I doubt you have it” with Lucy Dixon

PCD Live: “That’s rare, I doubt you have it” with Lucy Dixon

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PCD Live: “That’s rare, I doubt you have it” with Lucy Dixon

Join us on Wednesday 3rd November for the newest instalment of PCD Live: “That’s rare, I doubt you have it” with Lucy Dixon.

Sign up on Eventbrite now!!

 

What’s the talk about?

In this month’s PCD Live, Lucy will talk about some research she has done with others with PCD to understand how people are impacted by PCD from different perspectives. She will share some of the stories of our members to highlight the positive and negative impacts that PCD can have. Come and hear about this unique project in a safe and informal setting. Open to all!

 

Who is giving this talk?

Outside of her role as the chair of PCD Support UK, Lucy is studying for her Masters in Social Research at the University of York. Lucy has focused on addressing inequality in both education and health throughout her professional career.

 

Important details to note:

This event is aimed at people with/affected by PCD, or anyone who has an interested in PCD. Anyone below the age of 18 can attend but must ensure they permission from a parent/guardian to do so. The event will be held via Zoom. We will send out joining details 24 hours before the event.
This event is scheduled for 5.30-6.30 PM UK time.
The hashtag for this event is #PCDLive – don’t forget to tweet, facebook and insta us!

Sign up on Eventbrite now!!