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.

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Journal
Pediatric Pulmonology
Published
2026-11-01
DOI
https://doi.org/10.1002/ppul.71892
Primary Topic
Cystic Fibrosis Research Advances
Type
article
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article

United Kingdom Professional Consensus on Candidate Items and Domains for Age Specific Paediatric Bronchiectasis Quality of Life Questionnaires: An e‐Delphi Study

Naomi Parsons, Kirstin Unger, Stefan Achim Unger, Maya Desai et al.
Pediatric Pulmonology
Cystic Fibrosis Research Advances
article

United Kingdom Professional Consensus on Candidate Items and Domains for Age Specific Paediatric Bronchiectasis Quality of Life Questionnaires: An e‐Delphi Study

Naomi Parsons, Kirstin Unger, Stefan Achim Unger, Maya Desai, Wanda Kozlowska, S.B. Carr, C. Pao, Nicki Barker, Clare Onyon, Sarah Spaght Brown, Lauren Bradbury, Prasad Nagakumar, Manjith Narayanan, Rajesh Srikantaiah, Evie Alexandra Robson, Deepa P. Patel, Joanne Colley, Priti Kenia, Hollie Smith, Julie Simpson, Elaine Edwards, Madeline Jeffries, Laura Baynton, Nicki Wedgbury
article en

Abstract

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.

Pediatric PulmonologyVol. 61(11)
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)
Openalex Percentile: Top 12%
Cystic Fibrosis Research Advances
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