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A core outcome set for bronchiectasis in children and adolescents for use in clinical research: an international consensus study.

Chang, AB; Boyd, J; Bush, A; Hill, AT; Powell, Z; Zacharasiewicz, A; Alexopoulou, E; Collaro, AJ; Chalmers, JD; Constant, C; et al. Chang, AB; Boyd, J; Bush, A; Hill, AT; Powell, Z; Zacharasiewicz, A; Alexopoulou, E; Collaro, AJ; Chalmers, JD; Constant, C; Douros, K; Fortescue, R; Griese, M; Grigg, J; Hector, A; Karadag, B; Mazulov, O; Midulla, F; Moeller, A; Proesmans, M; Wilson, C; Yerkovich, ST; Kantar, A; Grimwood, K (2024) A core outcome set for bronchiectasis in children and adolescents for use in clinical research: an international consensus study. Lancet Respir Med, 12 (1). pp. 78-88. ISSN 2213-2619 https://doi.org/10.1016/S2213-2600(23)00233-3
SGUL Authors: Normansell, Rebecca Alice

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Abstract

Improving the treatment of non-cystic fibrosis bronchiectasis in children and adolescents requires high-quality research with outcomes that meet study objectives and are meaningful for patients and their parents and caregivers. In the absence of systematic reviews or agreement on the health outcomes that should be measured in paediatric bronchiectasis, we established an international, multidisciplinary panel of experts to develop a core outcome set (COS) that incorporates patient and parent perspectives. We undertook a systematic review from which a list of 21 outcomes was constructed; these outcomes were used to inform the development of separate surveys for ranking by parents and patients and by health-care professionals. 562 participants (201 parents and patients from 17 countries, 361 health-care professionals from 58 countries) completed the surveys. Following two consensus meetings, agreement was reached on a ten-item COS with five outcomes that were deemed to be essential: quality of life, symptoms, exacerbation frequency, non-scheduled health-care visits, and hospitalisations. Use of this international consensus-based COS will ensure that studies have consistent, patient-focused outcomes, facilitating research worldwide and, in turn, the development of evidence-based guidelines for improved clinical care and outcomes. Further research is needed to develop validated, accessible measurement instruments for several of the outcomes in this COS.

Item Type: Article
Additional Information: © 2023. This manuscript version is made available under the CC-BY-NC-ND 4.0 license https://creativecommons.org/licenses/by-nc-nd/4.0/
Keywords: Humans, Adolescent, Child, Quality of Life, Delphi Technique, Systematic Reviews as Topic, Outcome Assessment, Health Care, Bronchiectasis, Treatment Outcome, Research Design, Humans, Bronchiectasis, Treatment Outcome, Research Design, Quality of Life, Delphi Technique, Adolescent, Child, Systematic Reviews as Topic, Outcome Assessment, Health Care, 1103 Clinical Sciences, 1117 Public Health and Health Services, 1199 Other Medical and Health Sciences
SGUL Research Institute / Research Centre: Academic Structure > Population Health Research Institute (INPH)
Journal or Publication Title: Lancet Respir Med
ISSN: 2213-2619
Language: eng
Dates:
DateEvent
2 January 2024Published
6 December 2023Published Online
9 June 2023Accepted
Publisher License: Creative Commons: Attribution-Noncommercial-No Derivative Works 4.0
Projects:
Project IDFunderFunder ID
UNSPECIFIEDEuropean Respiratory Societyhttp://dx.doi.org/10.13039/100008593
APP1154302National Health and Medical Research Councilhttp://dx.doi.org/10.13039/501100000925
APP2003334National Health and Medical Research Councilhttp://dx.doi.org/10.13039/501100000925
PubMed ID: 38070531
Go to PubMed abstract
URI: https://openaccess.sgul.ac.uk/id/eprint/116217
Publisher's version: https://doi.org/10.1016/S2213-2600(23)00233-3

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