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Do visually impaired children and their parents agree on the child's vision-related quality of life and functional vision?

Tadić, V; Cumberland, PM; Lewando-Hundt, G; Rahi, JS; Vision-related Quality of Life Group, .; (2016) Do visually impaired children and their parents agree on the child's vision-related quality of life and functional vision? British Journal of Ophthalmology , 101 pp. 244-250. 10.1136/bjophthalmol-2016-308582. Green open access

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Abstract

AIMS: To investigate agreement between children with visual impairment (VI) and their parents on their ratings of the child's vision-related quality of life (VQoL) and functional vision (FV) using two novel self-report patient-reported outcome measures developed for this population. METHODS: 99 children aged 10-15 years (mean age=12.2, SD=1.9) with VI (best corrected acuity (logarithm of the minimum angle of resolution) 0.50 or worse in better eye) and their parents participated in a national postal survey, completing the child and proxy versions of our novel instruments assessing VQoL and FV of children with VI-the vision-related quality of life instrument for children and young people (VQoL_CYP) and the functional vision questionnaire for children and young people (FVQ_CYP), respectively. Parent-child agreement was investigated using the Bland-Altman (BA) method. Variation across key sociodemographic and clinical characteristics was examined using the Intraclass Correlation Coefficient. RESULTS: Average parental ratings of their child's VQoL and FV were significantly lower than the children's own ratings, but the range of disagreement was wide, with parents both overestimating and underestimating their child's VQoL (mean score difference=5.7, BA limits of agreement (LOA): lower -22.10 (CI 95% -24.61 to 19.59) and upper 33.50 (CI 95% 30.99 to 36.01)), but more consistently underestimating the child's FV (mean score difference=-11.8, BA LOA: lower -39.60 (CI 95% -42.12 to 37.08) and upper 16 (CI 95% 13.48 to 18.52)). There was variation in agreement by some child characteristics, including vision level, time of onset and course of VI progression. CONCLUSIONS: Visually impaired children and their parents perceive the broader impact of living with VI very differently. There is value in routine capture of information independently from children and their parents for comprehensively gauging the impact of childhood VI and tailoring appropriate interventions.

Type: Article
Title: Do visually impaired children and their parents agree on the child's vision-related quality of life and functional vision?
Open access status: An open access version is available from UCL Discovery
DOI: 10.1136/bjophthalmol-2016-308582
Publisher version: http://dx.doi.org/10.1136/bjophthalmol-2016-308582
Language: English
Additional information: Copyright © Article author (or their employer) 2016. Produced by BMJ Publishing Group Ltd under licence. This is an Open Access article distributed in accordance with the terms of the Creative Commons Attribution (CC BY 4.0) license (http://creativecommons.org/licenses/by/4.0/), which permits others to distribute, remix, adapt and build upon this work, for commercial use, provided the original work is properly cited.
UCL classification: UCL
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences > Institute of Ophthalmology
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Population Health Sciences > UCL GOS Institute of Child Health
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Population Health Sciences > UCL GOS Institute of Child Health > Population, Policy and Practice Dept
URI: https://discovery.ucl.ac.uk/id/eprint/1500863
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