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

Author:

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

Abstract

ObjectiveWithin 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.DesignScale 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.ResultsItems 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.ConclusionsThe 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.

Funder

NHMRC Centre for Research Excellence in Respiratory Health of Aboriginal and Torres Strait Islander Children

Queensland Children’s Hospital Foundation

Australia’s National Health and Medical Research Council (NHMRC) Practitioner Fellowship

Publisher

BMJ

Subject

General Medicine

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