TABLE 1

Parent/patient survey: clinical needs themes and priorities

ThemeItems (verbatim from survey questions)Mean score
Awareness and diagnosisTo find ways to diagnose bronchiectasis earlier, such as by local doctors#3.86
To improve awareness of bronchiectasis in community care services, e.g. among community-based nurses and physiotherapists3.82
To identify the cause(s) of bronchiectasis3.80
Education and support for parents and familiesKnowing more about the role of physiotherapy and pulmonary rehabilitation (a short course of regular exercise sessions and education sessions)3.80
Having access to reliable, easy to understand information about different aspects of living with bronchiectasis3.78
Providing each person with copies of their test results so they can keep a useful history of the progress of their own condition3.74
Develop better ways of teaching people to use their medicines3.71
Improving access to quality careHaving access to physiotherapy and being taught the techniques and how to use the equipment at home3.94
Good communication between healthcare professionals and each person with bronchiectasis3.91
Testing new techniques for managing bronchiectasis in real world environments, such as at home and community3.86
Better access to tests and experts on bronchiectasis3.80
Using peer support forums and social media to exchange information with others3.52
Managing exacerbationsHaving an action management plan for flare-ups/exacerbations3.94
Having a self-management programme and care plan designed with each person to help them have greater control over their condition and recognise/manage an exacerbation3.92
Finding triggers of exacerbation3.86
Educating primary care doctors to prescribe the same dose/length of antibiotic therapy for exacerbations as used in cystic fibrosis3.81
Improving treatmentTo improve how children with bronchiectasis are treated through using longer-term antibiotic therapy when a person's condition is stable+3.71
Being able to identify people at increased risk of poor outcomes or needing urgent treatment for their bronchiectasis3.85
Being able to monitor and treat the coughing up of blood3.77
Improving monitoringHaving regular lung function testing to help notice changes or increased risk of an exacerbation3.76
Being able to monitor cough3.68
Regular sputum examinations when a person is stable and during an exacerbation to learn more about how the condition changes3.64
Having the equipment at home to monitor symptoms3.58
Ensuring each person has access to a home intravenous antibiotic service to avoid unnecessary hospital admissions3.53
Having regular computed tomography scans to look for changes or increased risk of an exacerbation§3.45
  • #: refers to parent's/patient's experience of delayed referral from a lack of awareness of the symptoms of bronchiectasis and dismissing children's chronic wet cough; importantly, we do not expect primary care doctors to undertake computed tomography (CT) scans in young children. : refers to parent's/patient's experience that they are often given a shorter antibiotic course (e.g. 3 days as opposed to current guideline recommendations of 14 days [12]) and/or lower doses than what is generally considered optimal; doses for children with CF are generally higher than for those without CF as children with CF have higher volume of distribution and renal clearance mechanisms; thus, we do not suggest prescribing antibiotics using CF-based dosing regimens, as it can be potentially dangerous for some agents. +: refers to identifying when and in whom long-term antibiotics should be used to induce clinical stability. §: the ERS Clinical Practice Guidelines [12] state that “In children/adolescents with bronchiectasis, we suggest the decision to repeat chest CT scans is individualised based on the clinical status and setting. Remarks: Repeat chest CT scans should be considered to answer a question which will change management.”