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

doi:10.1136/bmjopen-2020-046007

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

BMJ Open. 2021 Aug 16;11(8):e046007. doi: 10.1136/bmjopen-2020-046007.

Authors

Kaley Butten¹, Lee Jones², Peter A Newcombe³, Anne B Chang^{4

5

6}, Jeanie K Sheffield³, Kerry-Ann F O'Grady², Newell W Johnson^{7

8}, Anna Maria Bell⁹, Greggory Ross⁹, Maree Toombs¹⁰

Affiliations

¹ Institute of Health & Biomedical Innovation, Queensland University of Technology - QUT, Brisbane, Queensland, Australia kaley.butten@hdr.qut.edu.au.
² Institute of Health & Biomedical Innovation, Queensland University of Technology - QUT, Brisbane, Queensland, Australia.
³ School of Psychology, The University of Queensland, Saint Lucia, Queensland, Australia.
⁴ Department of Respiratory Medicine, Queensland Children's Hospital, South Brisbane, Queensland, Australia.
⁵ Child Health Division, Menzies School of Health Research, Darwin, Queensland, Australia.
⁶ Faculty of Health, Queensland University of Technology, Brisbane, Queensland, Australia.
⁷ Menzies Health Institute Queensland and School of Dentistry and Oral Health, Gold Coast Campus - Griffith University, Gold Coast, Queensland, Australia.
⁸ Faculty of Dentistry, Oral and Craniofacial Sciences, King's College London, London, UK.
⁹ Queensland Children's Hospital, South Brisbane, Queensland, Australia.
¹⁰ Faculty of Medicine, The University of Queensland, Herston, Queensland, Australia.

Abstract

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.

Keywords: community child health; paediatrics; public health; quality in health care.

Publication types

Research Support, Non-U.S. Gov't

MeSH terms

Australia
Child
Child, Preschool
Humans
Parents*
Quality of Life*
Reproducibility of Results
Surveys and Questionnaires