United Kingdom Professional Consensus on Candidate Items and Domains for Age Specific Paediatric Bronchiectasis Quality of Life Questionnaires: An e‐Delphi Study
Hollie Smith, Siobhan Carr, Stefan Unger, Kirstin Unger, Wanda J Kozlowska, Elaine Edwards, Julie Simpson, Rajesh Srikantaiah, Sarah Brown, Manjith Narayanan, Nicki Barker, Nicki Wedgbury, Maya Desai, Joanne Colley, Laura Baynton, Madeline Jeffries, Deepa Patel, Naomi Parsons, Lauren Bradbury, Clare Onyon, Evie Robson, Caroline S. Pao, Prasad Nagakumar, Priti KeniaABSTRACT
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.