The European Lung Foundation (ELF) undertook two surveys to help shape the future of childhood bronchiectasis, as part of the European Respiratory Society taskforce to develop a "Clinical practice guidelines for managing children and adolescents with bronchiectasis”. Parents/patients with bronchiectasis as a child undertook the first survey and health practitioners undertook the second survey.
To develop a roadmap of clinical and research priorities from the parents’ and clinicians’ perspectives
Preliminary results from the consumer survey:
225 respondents from 21 countries took part in the survey with just under a third being adults diagnosed with bronchiectasis as children (31%) and the rest being a parent, relative/carer of a child or young adult with bronchiectasis (69%).
The 3 aspects most affected their child’s quality of life, as rated by parents were: physiotherapy/airway clearance, medications and exacerbations.
Both parents and adults rated the most important area to improve for self-management as having access to physiotherapy and being taught the techniques and how to use the equipment at home. The next highest clinical need expressed was; having an action management plane for flare-ups/exacerbations.
In partnership with the ELF and the Parent Advisory Group, we are developing this roadmap that will guide future clinical and research priorities. The project was completed in January 2021 and the manuscript submitted in February 2021.
Funded by: European Respiratory Society (Taskforce #2018-03) and AusBREATHE (in kind)
Chief Investigators: Jeanette Boyd (ELF), Chang AB (Co-Chair), Kantar A (Co-Chair), Grimwood K, Zacharasiewicz A, Wilson C, Goyal V, Masters IB.
Collaborating sites: Austria, Italy, England, Scotland, Turkey, South Korea