United Kingdom Professional Consensus on Candidate Items and Domains for Age Specific Paediatric Bronchiectasis Quality of Life Questionnaires: An e‐Delphi Study
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.
Authors
- Naomi Parsons
- Kirstin Unger
- Stefan Achim Unger (ORCID: https://orcid.org/0000-0001-7089-5063)
- Maya Desai (ORCID: https://orcid.org/0000-0002-9928-866X)
- Wanda Kozlowska (ORCID: https://orcid.org/0009-0006-3252-5399)
- S.B. Carr (ORCID: https://orcid.org/0000-0003-0580-2478)
- C. Pao (ORCID: https://orcid.org/0000-0002-1749-5295)
- Nicki Barker (ORCID: https://orcid.org/0000-0002-7308-8651)
- Clare Onyon
- Sarah Spaght Brown (ORCID: https://orcid.org/0000-0002-8212-4060)
- Lauren Bradbury
- Prasad Nagakumar (ORCID: https://orcid.org/0000-0003-0837-0308)
- Manjith Narayanan (ORCID: https://orcid.org/0000-0002-7607-1775)
- Rajesh Srikantaiah
- Evie Alexandra Robson (ORCID: https://orcid.org/0000-0003-1247-7431)
- Deepa P. Patel (ORCID: https://orcid.org/0000-0003-2464-4022)
- Joanne Colley
- Priti Kenia (ORCID: https://orcid.org/0009-0000-0980-4417)
- Hollie Smith (ORCID: https://orcid.org/0009-0007-8996-228X)
- Julie Simpson
- Elaine Edwards
- Madeline Jeffries
- Laura Baynton (ORCID: https://orcid.org/0009-0006-4219-6867)
- Nicki Wedgbury
Institutions
- Leeds General Infirmary (GB)
- NHS Lothian (GB)
- Queen Mary University of London (GB)
- Guy's and St Thomas' NHS Foundation Trust (GB)
- Barts Health NHS Trust (GB)
- Leeds Teaching Hospitals NHS Trust (GB)
- Worcestershire Acute Hospitals NHS Trust (GB)
- University Hospital Coventry (GB)
- University Hospitals of Leicester NHS Trust (GB)
- Cambridge University Hospitals NHS Foundation Trust (GB)
- Royal Brompton Hospital (GB)
- Royal Hospital for Sick Children (GB)
- Sheffield Children's NHS Foundation Trust (GB)
- Birmingham Women’s and Children’s NHS Foundation Trust (GB)
- Addenbrooke's Hospital (GB)
- University of Birmingham (GB)
- University of Edinburgh (GB)
Publication Details
- Journal
- Pediatric Pulmonology
- Published
- 2026-11-01
- DOI
- https://doi.org/10.1002/ppul.71892
- Primary Topic
- Cystic Fibrosis Research Advances
- Type
- article
- Field-Weighted Citation Impact
- 0.00