Child-BEAR-Net, an international network, is working to fill the knowledge gaps and improve the quality of care in the field of childhood bronchiectasis, a neglected chronic disease.
One of their aims is to develop a Quality Standards document based on the European Respiratory Society (ERS) guidelines for the management of children and adolescents with bronchiectasis (2021).
Based on the recommendations in the guideline, Child-BEAR-Net have drafted 7 Quality Standards for managing children with bronchiectasis and they would like to hear from parents, relatives or carers of a child or young adult with bronchiectasis (aged 0-17 years) or adults with bronchiectasis (aged 18+) who were diagnosed, or had the condition as a child.
This work is important as the quality of care that children receive is often unequal and the standards will be used to help standardise healthcare for children and young people with bronchiectasis by setting standards that will improve their care and quality of life.
The survey is available in English, German, Italian, Portuguese, Spanish, Turkish and Ukrainian. Select your language from the drop-down box on the survey page.
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