Parent/patient survey: research priorities and themes

Research themeItems (verbatim from survey questions)Mean score
Understanding mechanisms and biology of bronchiectasisFinding ways to prevent bronchiectasis3.89
Identifying how bronchiectasis develops and continues3.87
Identifying the cause(s) of bronchiectasis3.80
Identifying how often and why bronchiectasis occurs in certain groups of people across the world3.74
Finding new ways to improve diagnosis and treatmentFinding ways to diagnose bronchiectasis earlier, such as by local doctors#3.86
Testing new techniques for managing bronchiectasis in real world environments, such as at home and community settings (not in the laboratory or in hospitals)3.86
Finding new medicines to treat bronchiectasis3.84
Finding new physiotherapy/airway clearance techniques3.79
Using longer-term antibiotic therapy when a person's condition is stable3.71
Developing medicines that can be taken in different ways, such as for inhaled or nebulised3.67
Improving knowledge and treatment of exacerbationsIdentifying triggers for an exacerbation3.86
Identifying people at increased risk of poor outcomes or needing urgent treatment for their bronchiectasis3.85
Using vaccines to prevent exacerbations3.78
Exploring the link between getting a cold (for example rhinovirus) and having an exacerbation3.74
Improving monitoring and how to identify predictors of disease progressionIdentifying what makes some patients’ bronchiectasis get worse3.92
Understanding the relationship between bronchiectasis and other medical conditions, e.g. asthma, “acid” reflux3.80
Being able to monitor and treat the coughing up of blood3.77
Having regular lung function testing to help notice changes or increased risk of an exacerbation3.76
Being able to monitor cough3.68
  • #: refers to parent's/patient's experience of delayed referral due to lack of awareness of the symptoms of bronchiectasis and dismissing children's chronic wet cough; we do not expect primary care doctors to undertake computed tomography scans in young children. : refers to identifying when and in whom long-term antibiotics should be used to induce clinical stability.