Parent/patient survey: research priorities and themes
| Research theme | Items (verbatim from survey questions) | Mean score |
| Understanding mechanisms and biology of bronchiectasis | Finding ways to prevent bronchiectasis | 3.89 |
| Identifying how bronchiectasis develops and continues | 3.87 | |
| Identifying the cause(s) of bronchiectasis | 3.80 | |
| Identifying how often and why bronchiectasis occurs in certain groups of people across the world | 3.74 | |
| Finding new ways to improve diagnosis and treatment | Finding 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 bronchiectasis | 3.84 | |
| Finding new physiotherapy/airway clearance techniques | 3.79 | |
| Using longer-term antibiotic therapy when a person's condition is stable¶ | 3.71 | |
| Developing medicines that can be taken in different ways, such as for inhaled or nebulised | 3.67 | |
| Improving knowledge and treatment of exacerbations | Identifying triggers for an exacerbation | 3.86 |
| Identifying people at increased risk of poor outcomes or needing urgent treatment for their bronchiectasis | 3.85 | |
| Using vaccines to prevent exacerbations | 3.78 | |
| Exploring the link between getting a cold (for example rhinovirus) and having an exacerbation | 3.74 | |
| Improving monitoring and how to identify predictors of disease progression | Identifying what makes some patients’ bronchiectasis get worse | 3.92 |
| Understanding the relationship between bronchiectasis and other medical conditions, e.g. asthma, “acid” reflux | 3.80 | |
| Being able to monitor and treat the coughing up of blood | 3.77 | |
| Having regular lung function testing to help notice changes or increased risk of an exacerbation | 3.76 | |
| Being able to monitor cough | 3.68 |
#: 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.