Clinical and research priorities for children and young people with bronchiectasis: an international roadmap.

Journal

ERJ open research
ISSN: 2312-0541
Titre abrégé: ERJ Open Res
Pays: England
ID NLM: 101671641

Informations de publication

Date de publication:
Jul 2021
Historique:
received: 24 02 2021
accepted: 20 04 2021
entrez: 22 7 2021
pubmed: 23 7 2021
medline: 23 7 2021
Statut: epublish

Résumé

The global burden of children and young people (CYP) with bronchiectasis is being recognised increasingly. They experience a poor quality of life and recurrent respiratory exacerbations requiring additional treatment, including hospitalisation. However, there are no published data on patient-driven clinical needs and/or research priorities for paediatric bronchiectasis. Parent/patient-driven views are required to understand the clinical needs and research priorities to inform changes that benefit CYP with bronchiectasis and reduce their disease burden. The European Lung Foundation and the European Respiratory Society Task Force for paediatric bronchiectasis created an international roadmap of clinical and research priorities to guide, and as an extension of, the clinical practice guideline. This roadmap was based on two global web-based surveys. The first survey (10 languages) was completed by 225 respondents (parents of CYP with bronchiectasis and adults with bronchiectasis diagnosed in childhood) from 21 countries. The parent/patient survey encompassed both clinical and research priorities. The second survey, completed by 258 health practitioners from 54 countries, was limited to research priorities. The two highest clinical needs expressed by parents/patients were: having an action management plan for flare-ups/exacerbations and access to physiotherapists. The two highest health practitioners' research priorities related to eradication of airway pathogens and optimal airway clearance techniques. Based on both surveys, the top 10 research priorities were derived, and unanimous consensus statements were formulated from these priorities. This document addresses parents'/patients' clinical and research priorities from both the parents'/patients' and clinicians' perspectives and will help guide research and clinical efforts to improve the lives of people with bronchiectasis.

Identifiants

DOI: 10.1183/23120541.00122-2021 PMID: 34291113 PMC: PMC8287136
pubmed: 34291113
doi: 10.1183/23120541.00122-2021
pii: 00122-2021
pmc: PMC8287136
pii:
doi:

Types de publication

Journal Article

Langues

eng

Informations de copyright

Copyright ©The authors 2021.

Déclaration de conflit d'intérêts

Conflict of interest: A.B. Chang reports grants from the National Health and Medical Research Council, Australia; and other fees to her institution from work relating to being a IDMC Member of an unlicensed vaccine (GSK) and an advisory member of study design for unlicensed molecule for chronic cough (Merck) outside the submitted work. Conflict of interest: J. Boyd is an employee of the European Lung Foundation. Conflict of interest: L. Bell has nothing to disclose. Conflict of interest: V. Goyal has nothing to disclose. Conflict of interest: I.B. Masters has nothing to disclose. Conflict of interest: Z. Powell has nothing to disclose. Conflict of interest: C. Wilson has nothing to disclose. Conflict of interest: A. Zacharasiewicz reports financial compensation for participation in advisory boards for Vertex, Novartis, Chiesi, Gilead and AOP; and lecture fees from Hagleitner Hygiene, AstraZeneca and Heine und Löwenstein. Conflict of interest: E. Alexopoulou has nothing to disclose Conflict of interest: A. Bush has nothing to disclose. Conflict of interest: J.D. Chalmers reports grants and personal fees from AstraZeneca, Boehringer Ingelheim, GlaxoSmithKline and Insmed, and personal fees from Chiesi, Gilead Sciences, Novartis and Zambon, outside the submitted work. Conflict of interest: R. Fortescue has nothing to disclose. Conflict of interest: A.T. Hill has nothing to disclose. Conflict of interest: B. Karadag has nothing to disclose. Conflict of interest: F. Midulla has nothing to disclose. Conflict of interest: G.B. McCallum has nothing to disclose. Conflict of interest: D. Snijders has nothing to disclose. Conflict of interest: W-J. Song has nothing to disclose. Conflict of interest: T. Tonia reports acting as an ERS methodologist. Conflict of interest: K. Grimwood reports various project grants and a Centre of Research Excellence relating to bronchiectasis in children from the Australian National Health and Medical Research Council and the Australian Medical Research Future Fund during the conduct of the study. Conflict of interest: A. Kantar has nothing to disclose.

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Auteurs

Anne B Chang (AB)

Australian Centre for Health Services Innovation, Queensland University of Technology, Brisbane, Queensland, Australia.
Dept of Respiratory and Sleep Medicine, Queensland Children's Hospital, Brisbane, Queensland, Australia.
Child Health Division, Menzies School of Health Research, Darwin, Northern Territory, Australia.
ORCID: 0000-0002-1331-3706

Jeanette Boyd (J)

European Lung Foundation, Sheffield, UK.

Leanne Bell (L)

European Lung Foundation Bronchiectasis Paediatric Patient Advisory Group, Sheffield, UK.

Vikas Goyal (V)

Australian Centre for Health Services Innovation, Queensland University of Technology, Brisbane, Queensland, Australia.
Dept of Respiratory and Sleep Medicine, Queensland Children's Hospital, Brisbane, Queensland, Australia.
ORCID: 0000-0001-7533-2315

I Brent Masters (IB)

Australian Centre for Health Services Innovation, Queensland University of Technology, Brisbane, Queensland, Australia.
Dept of Respiratory and Sleep Medicine, Queensland Children's Hospital, Brisbane, Queensland, Australia.

Zena Powell (Z)

European Lung Foundation Bronchiectasis Paediatric Patient Advisory Group, Sheffield, UK.

Christine Wilson (C)

Dept of Physiotherapy, Queensland Children's Hospital, Brisbane, Queensland, Australia.

Angela Zacharasiewicz (A)

Dept of Pediatrics and Adolescent Medicine, Teaching Hospital of the University of Vienna, Wilhelminen Hospital, Vienna, Austria.
ORCID: 0000-0002-0511-2138

Efthymia Alexopoulou (E)

2nd Radiology Dept, National and Kapodistrian University of Athens, Attikon University Hospital, Athens, Greece.
ORCID: 0000-0001-8466-4127

Andrew Bush (A)

Dept of Paediatric Respiratory Medicine, Royal Brompton Hospital, and National Heart and Lung Institute, Imperial School of Medicine, London, UK.

James D Chalmers (JD)

College of Medicine, University of Dundee, Ninewells Hospital and Medical School, Dundee, UK.

Rebecca Fortescue (R)

Population Health Research Institute, St George's University of London, London, UK.

Adam T Hill (AT)

Dept of Respiratory Medicine, Royal Infirmary and University of Edinburgh, Edinburgh, UK.

Bulent Karadag (B)

Division of Pediatric Pulmonology, Marmara University Faculty of Medicine, Istanbul, Turkey.

Fabio Midulla (F)

Dept of Maternal Science, Sapienza University of Rome, Rome, Italy.
ORCID: 0000-0001-7476-5266

Gabrielle B McCallum (GB)

Child Health Division, Menzies School of Health Research, Darwin, Northern Territory, Australia.
ORCID: 0000-0002-0210-1468

Deborah Snijders (D)

Dolomiti Local Health and Social Unit, Belluno, Veneto, Italy.

Woo-Jung Song (WJ)

Dept of Allergy and Clinical Immunology, Asan Medical Center, University of Ulsan College of Medicine, Seoul, South Korea.

Thomy Tonia (T)

Institute of Social and Preventive Medicine, University of Bern, Bern, Switzerland.

Keith Grimwood (K)

Depts of Infectious Disease and Paediatrics, Gold Coast Health, Southport, Queensland, Australia.
School of Medicine and Menzies Health Institute Queensland, Griffith University, Southport, Queensland, Australia.
These authors contributed equally as senior authors.

Ahmad Kantar (A)

Pediatric Asthma and Cough Centre, Istituti Ospedalieri Bergamaschi, University and Research Hospitals, Ponte San Pietro, Bergamo, Italy.
These authors contributed equally as senior authors.
ORCID: 0000-0002-3445-4612

Classifications MeSH