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

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 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. (Copyright ©The authors 2021.)eCollection. Cited Medium: Print. NLM ISO Abbr: ERJ Open Res. PubMed Central ID: PMC8287136. Linked References: Med J Aust. 2015 Jan 19;202(1):21-3. (PMID: 25588439); Chest. 2016 Nov;150(5):1101-1108. (PMID: 27400908); Eur Respir J. 2017 Sep 9;50(3):. (PMID: 28889110); Front Pediatr. 2017 Jan 24;5:2. (PMID: 28168184); Pediatr Pulmonol. 2019 Dec;54(12):1921-1926. (PMID: 31475469); Thorax. 2009 Mar;64(3):246-51. (PMID: 19052050); Lancet Respir Med. 2019 Sep;7(9):791-801. (PMID: 31427252); Eur Respir Rev. 2019 Nov 20;28(154):. (PMID: 31748420); Chest. 2018 Nov;154(5):1016-1023. (PMID: 29981718); Lung. 2020 Apr;198(2):361-369. (PMID: 32078041); Chest. 1998 May;113(5):1329-34. (PMID: 9596315); Respiration. 2015;90(4):299-305. (PMID: 26340658); Eur Respir J. 2016 Sep;48(3):632-47. (PMID: 27288031); Respirology. 2018 Nov;23(11):1006-1022. (PMID: 30207018); Chron Respir Dis. 2019 Jan-Dec;16:1479973119872513. (PMID: 31480862); Pediatr Pulmonol. 2009 Jul;44(7):669-75. (PMID: 19514055); Eur Respir J. 2021 Feb 11;:. (PMID: 33542057); Pediatr Pulmonol. 2012 Mar;47(3):300-7. (PMID: 21901858); Respir Med. 2012 Mar;106(3):356-60. (PMID: 22204744); Lancet Respir Med. 2019 Apr;7(4):358-364. (PMID: 30765254); Lancet Respir Med. 2017 Dec;5(12):935-945. (PMID: 29150410); BMC Pulm Med. 2020 Jun 16;20(1):172. (PMID: 32546272); Nat Rev Dis Primers. 2018 Nov 15;4(1):45. (PMID: 30442957); Chest. 2020 Oct;158(4):1566-1575. (PMID: 32387516); Lancet Respir Med. 2018 Jul;6(7):535-544. (PMID: 29628376); Chest. 2010 Jul;138(1):158-64. (PMID: 20173055); Clin Med (Lond). 2019 May;19(3):230-233. (PMID: 31092516); Respirology. 2020 Dec;25(12):1250-1256. (PMID: 32358912); PLoS One. 2014 Aug 11;9(8):e104236. (PMID: 25111142); Lancet. 2018 Sep 8;392(10150):880-890. (PMID: 30215383); Lancet. 2018 Sep 8;392(10150):866-879. (PMID: 30215382); J Cyst Fibros. 2021 Jan;20(1):8-16. (PMID: 33172756); Pediatr Pulmonol. 2016 May;51(5):450-69. (PMID: 26840008); Lancet Glob Health. 2019 May;7(5):e613-e623. (PMID: 31000131); Respiration. 2009;77(2):160-5. (PMID: 18523381); Pediatr Pulmonol. 2020 Apr;55(4):975-985. (PMID: 32096916); Arch Dis Child. 2014 Aug;99(8):749-53. (PMID: 24819370); Ann Am Thorac Soc. 2014 Sep;11(7):1039-48. (PMID: 24597615). Linking ISSN: 23120541. Subset: PubMed not MEDLINE; Date of Electronic Publication: 2021 Jul 19. ; Original Imprints: Publication: Sheffield : European Respiratory Society, [2015]- <br />