1. Differences in self-rated versus parent proxy-rated vision-related quality of life and functional vision of visually impaired children
- Author
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Valerija Tadić, Alexandra O Robertson, Lisanne A Horvat-Gitsels, Jugnoo S Rahi, and Mario Cortina-Borja
- Subjects
Parents ,0303 health sciences ,Functional vision ,Visually impaired ,Gold standard ,Visual impairment ,Logistic regression ,Proxy ,State Medicine ,Odds ,03 medical and health sciences ,Ophthalmology ,Cross-Sectional Studies ,0302 clinical medicine ,Quality of life ,Quality of Life ,030221 ophthalmology & optometry ,medicine ,Humans ,medicine.symptom ,Child ,Psychology ,030304 developmental biology ,Clinical psychology ,Parent proxy - Abstract
Purpose:\ud To investigate disagreement between children's self-reported vision-related quality of life (VQoL) and functional vision (FV), and their parents’ proxy-reports.\ud \ud Design:\ud Cross-sectional study.\ud \ud Methods:\ud 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.\ud \ud 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.\ud \ud Results:\ud 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.\ud \ud Conclusions:\ud 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.
- Published
- 2021