The Development of Paediatric Bronchiectasis Quality of Life Questionnaires for Four Demographic Groups: Children 8-12years, Young People 13 - 17 Years and Parent Proxy Versions for Ages 2-5years and 6-12years
This study is developing new questionnaires to help us better understand how bronchiectasis affects children and young people in their everyday lives. We want to hear directly from children aged 8-17, and from parents of younger children aged 2-12, about their experiences. By talking to them, we can create questions that truly capture what it's like to live with this condition. The goal is to make sure these questionnaires are easy to understand and relevant for different age groups. This will help doctors and researchers get a clearer picture of how treatments and support can improve the quality of life for children with bronchiectasis.
At a glance
What is this study about?
This study is all about understanding how bronchiectasis impacts the daily lives of children and young people. Bronchiectasis is a long-term lung condition that can cause frequent coughs, breathing problems, and tiredness. For children, this can affect their schooling, hobbies, and friendships, but it's often hard to measure just how much. That's why we're creating special questionnaires. These questionnaires are designed to ask questions about how children feel and what they can and can't do because of their condition, helping doctors get a better idea of their overall well-being, often called their 'quality of life'.
To make sure these questionnaires are really good and useful, we're not just guessing what questions to ask. Instead, we're talking directly to children and young people with bronchiectasis, as well as their parents. We want to hear from them about their day-to-day experiences and what matters most to them. This helps us write questions that are easy to understand, relevant, and cover all the important parts of living with bronchiectasis.
We're creating different versions of the questionnaire for different age groups – one for children aged 8-12, another for young people aged 13-17, and special versions for parents to fill out about their younger children aged 2-5 and 6-12. By getting feedback from all these different groups, we hope to create the best possible tools to help doctors and nurses understand how bronchiectasis affects children, and ultimately, to make their lives better.
Key takeaways
- The study aims to create better tools to understand how bronchiectasis affects children's lives.
- It involves talking to children (8-17) and parents (of children 2-12) with bronchiectasis.
- You'll help design and test new questionnaires.
- Your contribution will help improve care for future children with bronchiectasis.
- Participation involves interviews and can last up to 12 months.
- You can stop taking part at any time.
Who may be eligible?
You might be able to take part if you are the parent of a child aged between 2 and 12 years old who has bronchiectasis that was confirmed by a CT scan. Your child should also not have Cystic Fibrosis or a condition called Primary Ciliary Dyskinesia.
If you are a child or young person aged between 8 and 17, and you have bronchiectasis that was confirmed by a CT scan, you might also be able to take part. Again, you should not have Cystic Fibrosis or Primary Ciliary Dyskinesia.
We will need your written permission (called 'consent') to take part. For children, we will also ask for their agreement, known as 'assent', if they are old enough to understand.
Could this study suit you?
Answer these quick questions to see if you may be eligible. This is a guide only — the research team makes the final call.
- Is your child aged between 2 and 12, and do they have bronchiectasis confirmed by a CT scan? (For parents)
- Are you aged between 8 and 17, and do you have bronchiectasis confirmed by a CT scan? (For children/young people)
- Does your child / Do you NOT have Cystic Fibrosis or Primary Ciliary Dyskinesia?
- Are you able to give written permission to take part?
What does participation involve?
If you decide to take part, you'll be asked to have one or two informal chats, often called 'interviews', with the study team. These discussions will either explore what it's like living with bronchiectasis or, if you're a parent, what it's like caring for a child with the condition. Later, if you're willing, you might be asked to review a first version of the questionnaire and tell us if the questions make sense and are easy to answer. These interviews will take place over a maximum of 12 months. There are no medications or special treatments involved, and you can stop taking part at any time without giving a reason.
Potential risks and benefits
Locations (1)
- Birmingham Womens and Childrens NHS Foundation TrustVerified postcodeBirmingham, United Kingdom
Common questions
What is the main goal of this study?
The goal is to create new surveys to understand how bronchiectasis affects the daily lives of children and young people.
Who can take part in this study?
Children aged 8-17 with bronchiectasis, and parents of children aged 2-12 with bronchiectasis, can take part.
What will I have to do if I join?
You'll have a couple of friendly chats with the research team about your experiences and to help review the questions we create.
Will taking part improve my child's health?
While it won't directly change your child's health, your help will create a tool that could improve care for many other children later on.
What if I change my mind about taking part?
You are free to leave the study at any time, for any reason, and it won't affect your or your child's medical care.
How to find out more
Always speak to your GP or specialist before deciding to take part in a study.
Interested in taking part?
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