We are asking parents of children with PCD (younger than 6 years of age) to help us develop a Quality of Life Questionnaire. In the future we plan to do some studies to investigate different treatments in PCD. To see whether the treatments work, a Quality of Life Questionnaire will allow us to assess whether children feel better or have an improvement in their quality of life. This Quality of Life Questionnaire will do so by asking parents about their child’s health and how it directly affects them, for example, the impact PCD has on their family activities, social life, things that they worry about etc.
We would like to speak to parents about how PCD affects their and their child’s lives. This will allow us to develop a list of potential items to include in our PCD Quality of Life Questionnaire. Once the questionnaire is developed we will ask parents to complete the PCD Quality of Life questionnaire and other questionnaires over a period of time. If you are interested in taking part or would like more information about this study please email Lynn at L.E.Reeves@soton.ac.uk.
This study is being conducted by the University of Southampton which is one of four centres commissioned to provide specialist care for children diagnosed with PCD in England.
In this study we are working closely with the other centres nationally (Leicester, the Royal Brompton and Leeds/Bradford) and internationally (Sick Kids, Toronto and Chapel Hill, North Carolina) to ensure this work represents English speaking patients with PCD.
This project is being led by Professor Jane Lucas with the interviews being conducted by post doctorate researchers: Corine Driessens (firstname.lastname@example.org) and Laura Behan (email@example.com).