What is bronchiectasis?
Bronchiectasis is a chronic lung sickness. The breathing tubes (bronchi) have been damaged and don’t work as well as healthy breathing tubes. Children with bronchiectasis often have a wet sounding cough which can come and go, but sometimes can stay for a long time. Children with bronchiectasis get sick more often with chest infections.
What is this study about?
This study is about understanding the many possible ways your child’s bronchiectasis impacts on you, your child, and your family. If you choose to participate in this research study we will ask questions that relate to your child’s bronchiectasis and how it impacts on you, your child, and your family. All information gathered in this process will remain confidential.
The information you provide will help us to develop the first Quality of Life (QOL) questionnaire that is specific for children with bronchiectasis. We know that QOL tools that are specific for an illness are more sensitive than general ones. We also know QOL questionnaires designed for adults are not useful in children. This study will allow health professionals to better understand the specific impacts and effects that bronchiectasis has on children, their parents and their families. We will also be able to use a bronchiectasis specific QOL questionnaire as an evaluation tool in future research studies. Using the bronchiectasis specific QOL questionnaire in new medication trials will help to show if the medication is making make a difference.
What are the aims of the study?
- To develop a Bronchiectasis-specific QOL questionnaire for parents/caregivers of children with bronchiectasis (Child-BE-QOL)
- To determine the burden of bronchiectasis in children
- To evaluate psychological (child’s anxiety and parental emotional distress) and other influences on the reported burden of bronchiectasis.
To validate the QOL Questionnaire, we will compare the scores obtained from our new questionnaire with those from other standardised and validated health-related questionnaires.
