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

Anne B. Chang, Jeanette Boyd, Andrew Bush, Adam T. Hill, Zena Powell, Angela Zacharasiewicz, Efthymia Alexopoulou, Andrew J. Collaro, James D. Chalmers, Carolina Constant, Konstantinos Douros, Rebecca Fortescue, Matthias Griese, Jonathan Grigg, Andreas Hector, Bulent Karadag, Oleksandr Mazulov, Fabio Midulla, Alexander Moeller, Marijke ProesmansChristine Wilson, Stephanie T. Yerkovich, Ahmad Kantar, Keith Grimwood

    Research output: Contribution to journalReview articlepeer-review

    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.

    Original languageEnglish
    Pages (from-to)78-88
    Number of pages11
    JournalThe Lancet Respiratory Medicine
    Volume12
    Issue number1
    DOIs
    Publication statusPublished - Jan 2024

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