{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,8,31]],"date-time":"2026-08-31T21:22:00Z","timestamp":1788211320244,"version":"build-2803163510"},"reference-count":27,"publisher":"MDPI AG","issue":"24","license":[{"start":{"date-parts":[[2021,12,14]],"date-time":"2021-12-14T00:00:00Z","timestamp":1639440000000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["JCM"],"abstract":"<jats:p>Bronchiectasis is a neglected chronic respiratory condition. In children optimal appropriate management can halt the disease process, and in some cases reverse the radiological abnormality. This requires many facets, including parental\/carer bronchiectasis-specific knowledge, for which there is currently no such published data. Further, the importance of patient voices in guiding clinical research is becoming increasingly appreciated. To address these issues, we aimed to describe the voices of parents of children with bronchiectasis relating to (a) burden of illness and quality of life (QoL), (b) their major worries\/concerns and (c) understanding\/management of exacerbations. The parents of 152 children with bronchiectasis (median age = 5.8 years, range 3.5\u20138.4) recruited from the Queensland Children\u2019s Hospital (Australia) completed questionnaires, including a parent-proxy cough-specific QoL. We found that parents of children with bronchiectasis had impaired QoL (median 4.38, range 3.13\u20135.63) and a high disease burden with median 7.0 (range 4.0\u201310.0) doctor visits in 12-months. Parental knowledge varied with only 41% understanding appropriate management of an exacerbation. The highest worry\/concern expressed were long-term effects (n = 42, 29.8%) and perceived declining health (n = 36, 25.5%). Our study has highlighted the need for improved education, high parental burden and areas of concern\/worry which may inform development of a bronchiectasis-specific paediatric QoL tool.<\/jats:p>","DOI":"10.3390\/jcm10245856","type":"journal-article","created":{"date-parts":[[2021,12,14]],"date-time":"2021-12-14T11:11:35Z","timestamp":1639480295000},"page":"5856","update-policy":"https:\/\/doi.org\/10.3390\/mdpi_crossmark_policy","source":"Crossref","is-referenced-by-count":16,"title":["Burden of Care for Children with Bronchiectasis from Parents\/Carers Perspective"],"prefix":"10.3390","volume":"10","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-8614-1829","authenticated-orcid":false,"given":"Julie M.","family":"Marchant","sequence":"first","affiliation":[{"name":"Australian Centre for Health Services Innovation @ Centre for Healthcare Transformation, Queensland University of Technology, Brisbane, QLD 4059, Australia"},{"name":"NHMRC Centre for Research Excellence in Paediatric Bronchiectasis (AusBREATHE), Queensland Children\u2019s Hospital, Brisbane, QLD 4101, Australia"},{"name":"Department of Respiratory and Sleep Medicine, Queensland Children\u2019s Hospital, Brisbane, QLD 4101, Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Anne L.","family":"Cook","sequence":"additional","affiliation":[{"name":"Australian Centre for Health Services Innovation @ Centre for Healthcare Transformation, Queensland University of Technology, Brisbane, QLD 4059, Australia"},{"name":"NHMRC Centre for Research Excellence in Paediatric Bronchiectasis (AusBREATHE), Queensland Children\u2019s Hospital, Brisbane, QLD 4101, Australia"},{"name":"Department of Respiratory and Sleep Medicine, Queensland Children\u2019s Hospital, Brisbane, QLD 4101, Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-3519-4725","authenticated-orcid":false,"given":"Jack","family":"Roberts","sequence":"additional","affiliation":[{"name":"Australian Centre for Health Services Innovation @ Centre for Healthcare Transformation, Queensland University of Technology, Brisbane, QLD 4059, Australia"},{"name":"NHMRC Centre for Research Excellence in Paediatric Bronchiectasis (AusBREATHE), Queensland Children\u2019s Hospital, Brisbane, QLD 4101, Australia"},{"name":"Department of Respiratory and Sleep Medicine, Queensland Children\u2019s Hospital, Brisbane, QLD 4101, Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Stephanie T.","family":"Yerkovich","sequence":"additional","affiliation":[{"name":"Australian Centre for Health Services Innovation @ Centre for Healthcare Transformation, Queensland University of Technology, Brisbane, QLD 4059, Australia"},{"name":"NHMRC Centre for Research Excellence in Paediatric Bronchiectasis (AusBREATHE), Queensland Children\u2019s Hospital, Brisbane, QLD 4101, Australia"},{"name":"Department of Respiratory and Sleep Medicine, Queensland Children\u2019s Hospital, Brisbane, QLD 4101, Australia"},{"name":"Menzies School of Health Research, Charles Darwin University, Darwin, NT 0810, Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Vikas","family":"Goyal","sequence":"additional","affiliation":[{"name":"Australian Centre for Health Services Innovation @ Centre for Healthcare Transformation, Queensland University of Technology, Brisbane, QLD 4059, Australia"},{"name":"NHMRC Centre for Research Excellence in Paediatric Bronchiectasis (AusBREATHE), Queensland Children\u2019s Hospital, Brisbane, QLD 4101, Australia"},{"name":"Department of Respiratory and Sleep Medicine, Queensland Children\u2019s Hospital, Brisbane, QLD 4101, Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Daniel","family":"Arnold","sequence":"additional","affiliation":[{"name":"Australian Centre for Health Services Innovation @ Centre for Healthcare Transformation, Queensland University of Technology, Brisbane, QLD 4059, Australia"},{"name":"Menzies School of Health Research, Charles Darwin University, Darwin, NT 0810, Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Hannah E.","family":"O\u2019Farrell","sequence":"additional","affiliation":[{"name":"Australian Centre for Health Services Innovation @ Centre for Healthcare Transformation, Queensland University of Technology, Brisbane, QLD 4059, Australia"},{"name":"Menzies School of Health Research, Charles Darwin University, Darwin, NT 0810, Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-1331-3706","authenticated-orcid":false,"given":"Anne B.","family":"Chang","sequence":"additional","affiliation":[{"name":"Australian Centre for Health Services Innovation @ Centre for Healthcare Transformation, Queensland University of Technology, Brisbane, QLD 4059, Australia"},{"name":"NHMRC Centre for Research Excellence in Paediatric Bronchiectasis (AusBREATHE), Queensland Children\u2019s Hospital, Brisbane, QLD 4101, Australia"},{"name":"Department of Respiratory and Sleep Medicine, Queensland Children\u2019s Hospital, Brisbane, QLD 4101, Australia"},{"name":"Menzies School of Health Research, Charles Darwin University, Darwin, NT 0810, Australia"},{"name":"School of Medicine, University of Queensland, Brisbane, QLD 4072, Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"1968","published-online":{"date-parts":[[2021,12,14]]},"reference":[{"key":"ref_1","doi-asserted-by":"crossref","first-page":"45","DOI":"10.1038\/s41572-018-0042-3","article-title":"Bronchiectasis","volume":"4","author":"Chalmers","year":"2018","journal-title":"Nat. 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