Abstract
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 parents/patients’ 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.
Footnotes
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Conflict of interest: Dr. Chang reports grants from National Health and Medical Research Council, Australia (NHMRC); Other fees to the 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: Dr. Boyd has nothing to disclose.
Conflict of interest: Dr. Bell has nothing to disclose.
Conflict of interest: Dr. Goyal has nothing to disclose.
Conflict of interest: Dr. Masters has nothing to disclose.
Conflict of interest: Dr. Powell has nothing to disclose.
Conflict of interest: C. Wilson
Conflict of interest: A. Zacharasiewicz
Conflict of interest: Dr E. Alexopoulou has nothing to disclose
Conflict of interest: Dr. Bush has nothing to disclose.
Conflict of interest: Dr. Chalmers reports grants and personal fees from AstraZeneca, grants and personal fees from Boehringer-Ingelheim, personal fees from Chiesi, grants and personal fees from Glaxosmithkline, grants from Gilead Sciences, personal fees from Novartis, grants and personal fees from Insmed, personal fees from Zambon, outside the submitted work.
Conflict of interest: Dr. Fortescue has nothing to disclose.
Conflict of interest: Prof. Hill has nothing to disclose.
Conflict of interest: Dr. Karadag has nothing to disclose.
Conflict of interest: Dr. Midulla has nothing to disclose.
Conflict of interest: Dr. McCallum has nothing to disclose.
Conflict of interest: Dr. Snijders has nothing to disclose.
Conflict of interest: Dr. Song has nothing to disclose.
Conflict of interest: Ms Tonia reports acting 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: Dr. Kantar has nothing to disclose.
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- Received February 24, 2021.
- Accepted April 20, 2021.
- Copyright ©The authors 2021
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