Robertson, AO;
Tadić, V;
Horvat-Gitsels, LA;
Cortina-Borja, M;
Rahi, JS;
Child Vision PROMs group;
(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.
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.
| Type: | Article |
|---|---|
| Title: | Differences in Self-Rated Versus Parent Proxy–Rated Vision-Related Quality of Life and Functional Vision of Visually Impaired Children |
| Location: | United States |
| Open access status: | An open access version is available from UCL Discovery |
| DOI: | 10.1016/j.ajo.2021.05.017 |
| Publisher version: | https://doi.org/10.1016/j.ajo.2021.05.017 |
| Language: | English |
| Additional information: | This version is the author accepted manuscript. For information on re-use, please refer to the publisher’s terms and conditions. |
| Keywords: | Child self-report, FVQ_CYP, PROMs, Parent-proxy report, VQoL_CYP, agreement, disagreement, functional vision, informants, patientreported outcome measures, self-report, vision-related quality of life, vision-specific outcomes |
| 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 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/10129772 |
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