Development and validation of a parent-proxy health-related quality of life survey for Australian First Nations children

Kaley Butten, Lee Jones, Peter A. Newcombe, Anne B. Chang, Jeanie K. Sheffield, Kerry-Ann F. O'Grady, Newell W. Johnson, Anna Maria Bell, Greggory Ross, Maree Toombs

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    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, 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.

    Original languageEnglish
    Article numbere046007
    Pages (from-to)1-9
    Number of pages9
    JournalBMJ Open
    Issue number8
    Publication statusPublished - 16 Aug 2021


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