CHESTI-Delphi study

Asking parents, children and young people, and professionals about the best ways to measure chest health in children with cerebral palsy
Two nurses share patient information by writing it on the patient file

Study overview

Design: Online international Delphi study
Study location: International
Aim: To agree the most important outcomes to measure in chest health for children with cerebral palsy. This is called a core outcome set.
Study participants: 
  • Children and young people with cerebral palsy 
  • Parents/carers 
  • Health, social and educational professionals
  • Academics and researchers
Contact us at Rachel.knightlozano@plymouth.ac.uk or call 07972702839
If you are interested in taking part in this study, please let us know:

Chesti Study logo with light background
 

Watch a video explaining your role in the study

Read an information sheet explaining your role in the study

Who are we?

Chief Investigator: Professor Jos Latour , ¾«Æ·ÎÞÂë¹ú²ú×Ô²ú
Principal investigator: Rachel Knight Lozano , ¾«Æ·ÎÞÂë¹ú²ú×Ô²ú
We lead a group of researchers, clinicians, and people with lived experience aiming to improve chest health in cerebral palsy.

What is the research about?

Chest health refers to how well someone can breathe, cough, and clear their lungs. Children with cerebral palsy are at higher risk of chest health problems like noisy breathing, a weak cough, difficulty swallowing or clearing mucus. This often leads to repeated chest infections and is the main reason children with cerebral palsy need antibiotics and hospital stays. 
Chest health treatments are tested to see how well they work. To do this, researchers look at the effects of a treatment. These are called ‘outcomes’. Outcomes may include changes to a person’s health, like breathing, or other important things like time off school and hospital visits. Right now, researchers use different outcomes, and there’s no agreement on the best way to measure chest health. The CHESTI-study aims to agree the most important outcomes to measure in chest health for children with cerebral palsy. This is called a core outcome set.

Why have you been invited?

We need your help to decide which outcomes matter most. We want to hear from people who know a lot about cerebral palsy and chest health. This includes:
  • People aged 8–25 years old, with cerebral palsy and lived experience of a chest health problem, and their parents who support and care for them
  • Professionals providing care for children with cerebral palsy for over 18 months, like health, social care, or education professionals
  • Researchers or academics with an interest in cerebral palsy and/or chest health.
You are also welcome to share the study invitation with other relevant professionals or people with lived experience that may be interested in taking part. 

What will you be asked to do?

We will ask you to take part in a series of three online surveys, called a Delphi study:
  1. A list of outcomes have been collected from research papers and interviews with children and young people parent/carers and professionals. The list is presented in an online survey and sent it to you, using your preferred email. 
  2. You are invited to rate how important each outcome is. The survey will be anonymous so everyone can share their honest opinion. You can also add items to the list. Overall group ratings and comments will be shared anonymously in the next survey. You will be asked to consider this information and rate the outcomes again. This will be repeated one more time.
  3. A final online meeting will be held to agree the most important outcomes of chest health in children with cerebral palsy. You can decide if you would like to be part of this meeting. 

What will your information be used for? 

The final core outcome set will be used in both everyday care and research studies. This will help:
  • Researchers to test treatments in similar ways, to help decide which treatments work best to improve chest health and prevent illnesses.
  • Clinicians, children and families keep track of chest health and make early treatment decisions. 
The results will be published as an academic paper or presented at a conference. You will not be identified in any reports, presentations, or publications. You can also receive a summary of the findings in your preferred language. This study is part of a National Institute of Health Research funded project for Mrs. Rachel Knight Lozano and will also contribute to her PhD. 

Do you have to take part?

It is up to you to decide whether you want to take part. If you choose to take part, you’ll be asked to fill out a short registration form, which includes a consent form, before continuing to the survey.

Can you withdraw from this study?

You can leave the study at any time before each survey is submitted. However, you will be unable to withdraw your responses once you have submitted your completed survey. You can skip follow-up surveys. You do not need to give a reason. Leaving the study will not affect you. If you withdraw, we will not contact you unless you agree to it.

What are the possible benefits of taking part?

You will not directly benefit from the study. However, some people find taking part in research rewarding. Additionally, your views will help ensure the study findings are meaningful and relevant to future research and clinical practices. As a thank you, we will send a certificate of participation, updates on the study and a summary of the findings. 

Are there any possible disadvantages or risks in taking part?

The survey may remind you of a time when you or someone you know had a chest illness. If this makes you uncomfortable, you can choose not to answer the survey. We will also offer guidance for support after completing each survey.

How will your data be protected?

Data confidentiality is very important in this study. The first and second member of the research team will need to know your contact details, to send you study information like the survey. Your personal details will not be shared with anyone else. 
All other information we collect from you will be made anonymous. This means your name won’t be used in any survey feedback, reports, or publications. We will use a unique code to identify and store your data. This will be stored separate to your personal details.
All information will be collected digitally and stored securely in a password-protected file on OneDrive. This will only be accessed on university computers with passwords. Only the research team and approved university staff will be allowed to access the information. 
For more information about how the ¾«Æ·ÎÞÂë¹ú²ú×Ô²ú will store and protect your data, please read the additional information below.  

Who has reviewed this study?

This study has been reviewed and approved by the ¾«Æ·ÎÞÂë¹ú²ú×Ô²ú's Faculty of Health Research Ethics and Integrity Committee (study ID 5636).

What if you have a question or complaint?

If you have any concerns or complaints about this study's ethical conduct, please contact the Research Administrator, Faculty of Health Ethics and Integrity Committee, ¾«Æ·ÎÞÂë¹ú²ú×Ô²ú, Level 2 Marine Building, Drake Circus, ¾«Æ·ÎÞÂë¹ú²ú×Ô²ú, Devon, PL4 8AA 
Thank you for taking the time to read this information. If you have questions about the study, you can call 01752 587463 or email us at Rachel.knightlozano@plymouth.ac.uk

Additional information

The ¾«Æ·ÎÞÂë¹ú²ú×Ô²ú sponsors this study based in the United Kingdom. We will use information from you to undertake this study and act as the data controller. This means that we are responsible for looking after your information and using it properly. The ¾«Æ·ÎÞÂë¹ú²ú×Ô²ú will keep identifiable information about you for 10 years after the study concludes. Your rights to access, change or move your information are limited, as we need to manage your data in specific ways for the research to be reliable and accurate. If you withdraw from the study, we will keep the information about you that we have already obtained. We will use the minimum personally identifiable information to safeguard your rights. 
Your data may be stored indefinitely on external data repositories (e.g., the UK Data Archive) and be further processed for archiving purposes in the public interest or for historical, scientific, or statistical purposes. It may also move with the researcher who collected your data to another institution in the future.
If you have a general question about how the University uses your personal information, wish to exercise any of your rights, or complain about how you believe your data is being processed, don’t hesitate to contact the University’s Data Protection Officer: dpo@plymouth.ac.uk.
The legal basis used to process special category personal data (e.g., data that reveals the racial or ethnic origin, political opinions, religious or philosophical beliefs, trade union membership, health, sex life or sexual orientation, genetic or biometric data) will be for scientific and historical research or statistical purposes. To request a copy of the data held about you, please get in touch with dpo@plymouth.ac.uk.
Limits to confidentiality
Confidentiality will be maintained as far as it is possible unless you tell us something which implies that you or someone you mention might be in significant danger of harm and unable to act for themselves; in this case, we may have to inform the relevant agencies of this, but we would discuss this with you first. 
Additional ¾«Æ·ÎÞÂë¹ú²ú×Ô²ú information