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BACKGROUND: Paediatric bronchiectasis (PB) unrelated to cystic fibrosis or primary ciliary dyskinesia causes significant morbidity and impairs quality of life (QoL) for children and their families. An international consensus ranked a paediatric-specific QoL measure as the highest research priority, yet no self-report instrument exists for children and young people. We aimed to establish professional consensus on candidate items and domains to inform the development of age specific PB QoL questionnaires. METHODS: Candidate items were drawn verbatim from two validated paediatric respiratory instruments (QOL-PCD and CFQ-R), guided by published evidence. Multidisciplinary professionals from the Paediatric Bronchiectasis Network, United Kingdom (PBNetUK) rated items for child (6-12 years), young person (13-17 years) and parent proxy (6-12 years) over 2 e-Delphi rounds (≥ 70% agreement). A core group, including a parent representative finalised item sets. Feasibility was checked with 30 patients and parents. RESULTS: Of 34 professionals invited, 26, 21 and 20 rated the child (28 items), young person (36 items) and parent-proxy (33 items) versions in round one; round two retention was 90%-96%. Final versions comprised 19, 27 and 20 items across eight domains, with a 4-week recall period. For feasibility, participants rated length as appropriate (28/30) and items as easy to understand (mean 8.0-9.4/10). CONCLUSIONS: This professional consensus provides a candidate item pool and proposed domain framework that will guide the next stages of QoL questionnaire development - establishing content validity through concept elicitation and cognitive interviews with children, young people and parents, followed by psychometric validation to produce a validated QoL.
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Smith et al. (2026) studied this question.
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