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

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. (© Author(s) (or their employer(s)) 2021. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)Health Qual Life Outcomes. 2009 Aug 26;7:77. (PMID: 19709410); Saudi J Anaesth. 2017 May;11(Suppl 1):S80-S89. (PMID: 28616007); Eur J Pediatr. 2013 Oct;172(10):1299-304. (PMID: 23715654); Int J Equity Health. 2019 Feb 18;18(1):34. (PMID: 30777079); Soc Sci Med. 2019 Jul;233:138-157. (PMID: 31200269); Soc Sci Med. 1995 Nov;41(10):1403-9. (PMID: 8560308); Soc Sci Med. 1998 Jun;46(12):1569-85. (PMID: 9672396); Health Qual Life Outcomes. 2007 Jan 03;5:2. (PMID: 17201923); Chest. 2020 Jul;158(1S):S49-S56. (PMID: 32658652); Int J Equity Health. 2014 Oct 10;13:56. (PMID: 25301439); Contemp Nurse. 2013 Dec;46(1):28-40. (PMID: 24716759); J Adv Nurs. 2001 Nov;36(4):600-7. (PMID: 11703555); Aust J Prim Health. 2018 Jul;24(3):233-240. (PMID: 29804561); Qual Life Res. 2016 Sep;25(9):2161-78. (PMID: 27165149); J Paediatr Child Health. 2019 Jul;55(7):833-843. (PMID: 30444010); Behav Res Ther. 2004 Jul;42(7):813-39. (PMID: 15149901); BMC Oral Health. 2020 Feb 3;20(1):35. (PMID: 32013981); BMC Health Serv Res. 2017 Sep 15;17(1):659. (PMID: 28915842); Psychol Methods. 2003 Sep;8(3):322-37. (PMID: 14596494); J Pediatr Psychol. 2006 Mar;31(2):127-38. (PMID: 16467313); JDR Clin Trans Res. 2017 Jan;2(1):38-47. (PMID: 30938646); Soc Sci Med. 2017 Aug;187:164-173. (PMID: 28689090); Res Nurs Health. 2006 Oct;29(5):489-97. (PMID: 16977646); Aust N Z J Psychiatry. 2010 Oct;44(10):894-900. (PMID: 20932203); Behav Res Ther. 2001 Nov;39(11):1293-316. (PMID: 11686265); Dev Med Child Neurol. 2012 Dec;54(12):1085-95. (PMID: 22913566). Linking ISSN: 20446055. Subset: MEDLINE; Date of Electronic Publication: 2021 Aug 16. ; Original Imprints: Publication: [London] : BMJ Publishing Group Ltd, 2011- <br />