Do visually impaired children and their parents agree on the child's vision-related quality of life and functional vision?. Issue 3 (7th June 2016)

• Record Type: Journal Article
• Authors: Tadić, Valerija; Cumberland, Phillippa M; Lewando-Hundt, Gillian; Rahi, Jugnoo S
• Other Names: author non-byline.; Dale Naomi author non-byline.; Khaw Peng Tee author non-byline.; Moore Anthony author non-byline.; Salt Alison author non-byline.; Taylor David author non-byline.; Brown Corie author non-byline.; Craig Marianne author non-byline.; Ennals Christine author non-byline.; Keeley Sarah author non-byline.; Thompson Lucy author non-byline.; Osborne Jackie author non-byline.; Sobti Nidhi author non-byline.; Thomas Paula author non-byline.; Thompson Jude author non-byline.
• Is Part Of: British journal of ophthalmology. Volume 101:Issue 3(2017)
• Page Start: 244
• Page End: 250
• Publication Date: 2016-06-07
• Subjects: Child health (paediatrics) -- Epidemiology; Ophthalmology -- Periodicals; 617.7
• DOI: 10.1136/bjophthalmol-2016-308582
• Languages: English
• ISSNs: 0007-1161

Abstract

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.