Development and validation of a parent-proxy health-related quality of life survey for Australian First Nations children
Objective 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...
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ftdoajarticles:oai:doaj.org/article:fff8fa9729b34881b28d8a5ae71666e6 2023-05-15T16:15:01+02:00 Development and validation of a parent-proxy health-related quality of life survey for Australian First Nations children Anne B Chang Lee Jones Kerry-Ann F O'Grady Peter A Newcombe Jeanie K Sheffield Kaley Butten Newell W Johnson Anna Maria Bell Greggory Ross 2021-08-01T00:00:00Z https://doi.org/10.1136/bmjopen-2020-046007 https://doaj.org/article/fff8fa9729b34881b28d8a5ae71666e6 EN eng BMJ Publishing Group https://bmjopen.bmj.com/content/11/8/e046007.full https://doaj.org/toc/2044-6055 doi:10.1136/bmjopen-2020-046007 2044-6055 https://doaj.org/article/fff8fa9729b34881b28d8a5ae71666e6 BMJ Open, Vol 11, Iss 8 (2021) Medicine R article 2021 ftdoajarticles https://doi.org/10.1136/bmjopen-2020-046007 2022-12-31T11:53:16Z Objective 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, PedsQL4.0) 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 PedsQL4.0 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. Article in Journal/Newspaper First Nations Directory of Open Access Journals: DOAJ Articles Spence ENVELOPE(-45.150,-45.150,-60.683,-60.683) BMJ Open 11 8 e046007 |
institution |
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Directory of Open Access Journals: DOAJ Articles |
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ftdoajarticles |
language |
English |
topic |
Medicine R |
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Medicine R Anne B Chang Lee Jones Kerry-Ann F O'Grady Peter A Newcombe Jeanie K Sheffield Kaley Butten Newell W Johnson Anna Maria Bell Greggory Ross Development and validation of a parent-proxy health-related quality of life survey for Australian First Nations children |
topic_facet |
Medicine R |
description |
Objective 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, PedsQL4.0) 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 PedsQL4.0 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. |
format |
Article in Journal/Newspaper |
author |
Anne B Chang Lee Jones Kerry-Ann F O'Grady Peter A Newcombe Jeanie K Sheffield Kaley Butten Newell W Johnson Anna Maria Bell Greggory Ross |
author_facet |
Anne B Chang Lee Jones Kerry-Ann F O'Grady Peter A Newcombe Jeanie K Sheffield Kaley Butten Newell W Johnson Anna Maria Bell Greggory Ross |
author_sort |
Anne B Chang |
title |
Development and validation of a parent-proxy health-related quality of life survey for Australian First Nations children |
title_short |
Development and validation of a parent-proxy health-related quality of life survey for Australian First Nations children |
title_full |
Development and validation of a parent-proxy health-related quality of life survey for Australian First Nations children |
title_fullStr |
Development and validation of a parent-proxy health-related quality of life survey for Australian First Nations children |
title_full_unstemmed |
Development and validation of a parent-proxy health-related quality of life survey for Australian First Nations children |
title_sort |
development and validation of a parent-proxy health-related quality of life survey for australian first nations children |
publisher |
BMJ Publishing Group |
publishDate |
2021 |
url |
https://doi.org/10.1136/bmjopen-2020-046007 https://doaj.org/article/fff8fa9729b34881b28d8a5ae71666e6 |
long_lat |
ENVELOPE(-45.150,-45.150,-60.683,-60.683) |
geographic |
Spence |
geographic_facet |
Spence |
genre |
First Nations |
genre_facet |
First Nations |
op_source |
BMJ Open, Vol 11, Iss 8 (2021) |
op_relation |
https://bmjopen.bmj.com/content/11/8/e046007.full https://doaj.org/toc/2044-6055 doi:10.1136/bmjopen-2020-046007 2044-6055 https://doaj.org/article/fff8fa9729b34881b28d8a5ae71666e6 |
op_doi |
https://doi.org/10.1136/bmjopen-2020-046007 |
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BMJ Open |
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11 |
container_issue |
8 |
container_start_page |
e046007 |
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1766000745312681984 |