Abstract
AimsTo 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.Methods99 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.ResultsAverage 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.ConclusionsVisually 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.
Highlights
Visual impairment (VI) in childhood has significant far-reaching and lifelong impact with consequences for the child’s social and educational experiences and future career prospects.[1,2,3] Knowledge about children’s own perceptions of the impact of living with VI, in terms of day-to-day functioning and quality of life (QoL) is limited, due to the paucity of vision-specific patient-reported outcome measures (PROMs) for this population.Health-related QoL (HRQoL) is a complex construct shaped by personal lived experience and expectations in the context of a health condition,[4] most accurately assessed by self-reporting, which can be by children as young as 5 years.[5]
We examined agreement between children with VI and their parents, and whether this varied by key clinical and sociodemographic child characteristics, using two novel selfreport PROMs we recently developed for this population
The present study investigated concordance between child selfreport and parental proxy report on the impact of the child’s VI on his/her vision-related quality of life (VQoL) and functional vision (FV), using novel vision-specific PROMs for children with VI
Summary
Visual impairment (VI) in childhood has significant far-reaching and lifelong impact with consequences for the child’s social and educational experiences and future career prospects.[1,2,3] Knowledge about children’s own perceptions of the impact of living with VI, in terms of day-to-day functioning and quality of life (QoL) is limited, due to the paucity of vision-specific patient-reported outcome measures (PROMs) for this population.Health-related QoL (HRQoL) is a complex construct shaped by personal lived experience and expectations in the context of a health condition,[4] most accurately assessed by self-reporting, which can be by children as young as 5 years.[5]. Visual impairment (VI) in childhood has significant far-reaching and lifelong impact with consequences for the child’s social and educational experiences and future career prospects.[1,2,3] Knowledge about children’s own perceptions of the impact of living with VI, in terms of day-to-day functioning and quality of life (QoL) is limited, due to the paucity of vision-specific patient-reported outcome measures (PROMs) for this population. Agreement between parental proxy and children’s own reports of the impact of VI has only previously been examined in two studies,[8 9] both using the PedsQL,[10] a generic HRQoL measure, in the absence, at the time, of a vision-specific measure. Generic measures do not capture visionspecific issues so the nature and the extent of childparent discordance may not accurately represent the impact of the child’s VI per se
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