Call for participants to complete an online survey.
We would appreciate if parents of children with PCD (younger than 6 years of age) could help us with the development of a quality of life questionnaire. This involves completing this online survey.
The survey takes approximately ten minutes to complete and includes questions relating to how PCD affects quality of life of both parents and children in this age group. By asking how important or relevant each question is for you and your child, we will be able to determine which questions should be included in the final quality of life questionnaire. This list of questions has been informed by a large number of interviews we completed with parents across Europe and North America.
Once developed, this quality of life questionnaire will allow us to assess whether children feel better or have an improvement in their quality of life. It will be used in future studies to investigate different treatments in PCD.
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.
For more information about this study, please contact Laura Behan who is a post-doctoral researcher at University of Southampton ([email protected]).