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

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.

Community Engagement and Psychometric Methods in Aboriginal and Torres Strait Islander Patient-Reported Outcome Measures and Surveys—A Scoping Review and Critical Analysis

“…Most studies focused on survey assessment in one Australian state/territory (86%, n = 12) [ 26 , 27 , 28 , 29 , 30 , 31 , 32 , 33 , 34 , 35 , 36 , 37 ], however two (14%) were carried out nationally ( Table 3 ) [ 5 , 38 ]. Of the articles, 36% (n = 5) focused on regional settings [ 30 , 31 , 32 , 36 , 37 ], and another two on remote locations [ 27 , 29 ].…”

“…Surveys were designed to target different age groups ( Table 3 ). There were a similar number of articles focused on adults [ 5 , 30 , 31 , 33 , 34 , 37 , 38 ] and on adolescents and children [ 26 , 27 , 32 , 35 , 36 ]. Surveys and PROMs were designed to focus on a range of areas spanning racism (14%, n = 2) [ 37 , 38 ], out-of-pocket healthcare expenditure (n = 1) [ 5 ], health-related quality of life (n = 1) [ 26 ] and health and wellbeing (29%, n = 4) [ 30 , 31 , 35 , 36 ].…”

“…All articles contained Aboriginal leadership, evident through the authorship list and, in some cases, mentioned in the methods [ 5 , 26 , 27 , 28 , 29 , 30 , 31 , 32 , 33 , 34 , 35 , 36 , 37 , 38 ]. Community consultation through informant meetings, workshops, focus groups or pilot testing occurred with Aboriginal-community-controlled health organizations, Aboriginal Elders, senior community representatives, families, Aboriginal health practitioners/workers or researchers in 71% (n = 10) of studies.…”

“…Community consultation through informant meetings, workshops, focus groups or pilot testing occurred with Aboriginal-community-controlled health organizations, Aboriginal Elders, senior community representatives, families, Aboriginal health practitioners/workers or researchers in 71% (n = 10) of studies. Only a small number of articles (n = 4) cited how community consultation changed either their research process or items in their survey/PROM [ 26 , 31 , 36 , 37 ]. A further 21% (n = 3) articles partially met this criterion; these articles cited undertaking consultation but provided no further information, or they stated that the consultation process had been published in a different but related publication [ 34 , 35 , 38 ].…”

Measuring What Matters: Drawing on a Participatory Wellbeing Framework and Existing Data to Assess Child Wellbeing Outcomes Over Time

“…A broad literature base highlights the value and necessity of parental-proxy reports for certain questions related to young children (e.g. Butten et al, 2021;Ghysels & Van Vlasselaer, 2008;Varni et al, 2007), which explains the large proportion of proxy indicators collected in the LSAC study for children at younger waves. Finally, if no indicator was available that adequately reflected (in at least some form) the sub-domain, that sub-domain was left as missing for a given wave.…”