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dc.contributor.authorButten, Kaley
dc.contributor.authorJones, Lee
dc.contributor.authorNewcombe, Peter A
dc.contributor.authorChang, Anne B
dc.contributor.authorSheffield, Jeanie K
dc.contributor.authorO'Grady, Kerry-Ann F
dc.contributor.authorJohnson, Newell W
dc.contributor.authorBell, Anna Maria
dc.contributor.authorRoss, Greggory
dc.contributor.authorToombs, Maree
dc.date.accessioned2021-09-08T05:22:40Z
dc.date.available2021-09-08T05:22:40Z
dc.date.issued2021
dc.identifier.issn2044-6055
dc.identifier.doi10.1136/bmjopen-2020-046007
dc.identifier.urihttp://hdl.handle.net/10072/407767
dc.description.abstractObjective Within Australia, Aboriginal and Torres Strait Islander (First Nations) populations perceive health and well-being differently to non-Indigenous Australians. Existing health-related quality of life (HR-QoL) measurement tools do not account for these differences. The objective of this study was to develop and validate a culturally specific parent-proxy HR-QoL measurement tool for First Nations children. Design Scale development was informed by parents/carers of children with a chronic illness and an expert panel. The preliminary 39-item survey was reviewed (n=12) and tested (n=163) with parents/carers of First Nations children aged 0-12 years at baseline with comparative scales: The Kessler Psychological Distress Scale, generic HR-QoL (Paediatric QoL Inventory 4.0, PedsQL 4.0) and Spence Children's Anxiety Scale, and repeated (n=46) 4 weeks later. Exploratory Factor Analysis was used for scale reduction. Reliability and validity were assessed by internal consistency, test-retest, and correlations with comparison scales. Results Items within our First Nations-Child Quality of Life (FirstNations-CQoL) were internally consistent with Cronbach's alpha coefficients of ≥0.7 (quality of life, 0.808; patient experience, 0.880; patient support, 0.768) and overall test-retest reliability was good (r=0.75; 95% CI 0.593 to 0.856). Convergent validity was observed with the PedsQL 4.0 with Pearson's coefficients of r=0.681 (ages 2-4 years); r=0.651 (ages 5-12 years) and with the Kessler Psychological Distress scale (r=-0.513). Divergent validity against the Spence Anxiety Scale was not demonstrated. Conclusions The FirstNations-CQoL scale was accepted by the participants, reliable and demonstrated convergent validity with comparison measures. This tool requires further evaluation to determine responsiveness, its minimal important difference and clinical utility.
dc.description.peerreviewedYes
dc.languageEnglish
dc.publisherBMJ PUBLISHING GROUP
dc.relation.ispartofpagefrom046007
dc.relation.ispartofissue8
dc.relation.ispartofjournalBMJ Open
dc.relation.ispartofvolume11
dc.subject.fieldofresearchClinical sciences
dc.subject.fieldofresearchcode3202
dc.subject.keywordsScience & Technology
dc.subject.keywordsLife Sciences & Biomedicine
dc.subject.keywordsMedicine, General & Internal
dc.subject.keywordsGeneral & Internal Medicine
dc.subject.keywordsquality in health care
dc.titleDevelopment and validation of a parent-proxy health-related quality of life survey for Australian First Nations children
dc.typeJournal article
dc.type.descriptionC1 - Articles
dcterms.bibliographicCitationButten, K; Jones, L; Newcombe, PA; Chang, AB; Sheffield, JK; O'Grady, K-AF; Johnson, NW; Bell, AM; Ross, G; Toombs, M, Development and validation of a parent-proxy health-related quality of life survey for Australian First Nations children, BMJ Open, 2021, 11 (8), pp. 046007
dcterms.licensehttp://creativecommons.org/licenses/by-nc/4.0/
dc.date.updated2021-09-08T04:06:02Z
dc.description.versionVersion of Record (VoR)
gro.rights.copyright© Author(s) (or their employer(s)) 2021. This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/.
gro.hasfulltextFull Text
gro.griffith.authorJohnson, Newell W.


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