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Differences in self-rated versus parent proxy-rated vision-related quality of life and functional vision of visually impaired children

Differences in self-rated versus parent proxy-rated vision-related quality of life and functional vision of visually impaired children

Robertson, Alexandra O., Tadić, Valerija ORCID: 0000-0003-3982-0340, Horvat-Gitsels, Lisanne A., Cortina-Borja, Mario and Rahi, Jugnoo S. (2021) Differences in self-rated versus parent proxy-rated vision-related quality of life and functional vision of visually impaired children. American Journal of Ophthalmology, 230. pp. 167-177. ISSN 0002-9394 (doi:https://doi.org/10.1016/j.ajo.2021.05.017)

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Abstract

Purpose:
To investigate disagreement between children's self-reported vision-related quality of life (VQoL) and functional vision (FV), and their parents’ proxy-reports.

Design:
Cross-sectional study.

Methods:
152 children aged 7-18 years with visual impairment (VI) (defined by the World Health Organization), and their parents, were recruited from 22 National Health Service (NHS) Ophthalmology Departments in the United Kingdom.

Age-appropriate versions of 2 vision-specific instruments capturing VQoL and FV, were administered to children alongside modified versions for completion by parents on behalf of their child (i.e. parent proxy-report). Disagreement between self- and parent proxy-report was examined using the Bland-Altman (BA) method, and a threshold of disagreement based on 0.5 standard deviation. Disagreement was analysed according to participants’ age, gender and clinical characteristics, using logistic regression analyses.

Results:
Children rated themselves as having better outcomes than their parents did, although parents both under- and over-estimated their child's VQoL (mean score difference = 7.7). With each year of increasing age, there was a 1.18 (1.04 – 1.35) higher odds of children self-rating their VQoL better than their parents (p = 0.013). Although parents consistently under-estimated their child's FV (mean score difference = -4.7), no characteristics were significantly associated with differences in disagreement.

Conclusions:
Disagreement between child self-report on the impact of VI, and their parents’ proxy-reports varies by age. This implies that self-report from children must remain the gold standard. Where self-reporting is not possible, parent proxy-reports may provide useful insights, but must be interpreted with caution.

Item Type: Article
Uncontrolled Keywords: visual impairment, child-parent disagreement, discrepancy, Bland-Altman, children and young people
Faculty / School / Research Centre / Research Group: Faculty of Education, Health & Human Sciences
Faculty of Education, Health & Human Sciences > Applied Psychology Research Group
Faculty of Education, Health & Human Sciences > Institute for Lifecourse Development
Faculty of Education, Health & Human Sciences > Institute for Lifecourse Development > Centre for Vulnerable Children and Families
Faculty of Education, Health & Human Sciences > School of Health Sciences (HEA)
Last Modified: 08 Oct 2021 14:41
Selected for GREAT 2016: None
Selected for GREAT 2017: None
Selected for GREAT 2018: None
Selected for GREAT 2019: None
Selected for REF2021: None
URI: http://gala.gre.ac.uk/id/eprint/33026

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