Burden of care for children with bronchiectasis from parents/carers perspective

Julie M. Marchant, Anne L. Cook, Jack Roberts, Stephanie T. Yerkovich, Vikas Goyal, Daniel Arnold, Hannah E. O’Farrell, Anne B. Chang

Research output: Contribution to journalArticlepeer-review

5 Citations (Scopus)
103 Downloads (Pure)

Abstract

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 3.5–8.4) recruited from the Queensland Children’s 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 3.13–5.63) and a high disease burden with median 7.0 (range 4.0–10.0) 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.

Original languageEnglish
Article number5856
Pages (from-to)1-9
Number of pages9
JournalJournal of Clinical Medicine
Volume10
Issue number24
DOIs
Publication statusPublished - 1 Dec 2021

Bibliographical note

Funding Information:
This work was supported by a project grant from the Queensland Children?s Hospital Foundation (CHF), Grant Number 50273. ABC is supported by a NHMRC practitioner fellowship (grant APP1154302). JMM is supported by a CHF early career fellowship (grant RPC0772019). JR is supported by a NHMRC Centre for Research Excellence in Paediatric Bronchiectasis (AusBREATHE) PhD scholarship. The views expressed in this publication are those of the authors and do not reflect the views of the funders.

Publisher Copyright:
© 2021 by the authors. Licensee MDPI, Basel, Switzerland.

Copyright:
Copyright 2021 Elsevier B.V., All rights reserved.

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