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



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.



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.



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.
Population, Policy and Practice Programme, Life Course Epidemiology and Biostatistics Section, University College London (UCL) Institute of Child Health, London, UK.|Great Ormond Street Hospital for Children NHS Foundation Trust, London, UK.
Valerija
V
Tadić
Population, Policy and Practice Programme, Life Course Epidemiology and Biostatistics Section, University College London (UCL) Institute of Child Health, London, UK.|Ulverscroft Vision Research Group, London, UK.
Phillippa M
PM
Cumberland
Warwick Medical School, University of Warwick, Coventry, UK.
Gillian
G
Lewando-Hundt
Population, Policy and Practice Programme, Life Course Epidemiology and Biostatistics Section, University College London (UCL) Institute of Child Health, London, UK.|Great Ormond Street Hospital for Children NHS Foundation Trust, London, UK.|Ulverscroft Vision Research Group, London, UK.|National Institute for Health Research Biomedical Research Centre at Moorfields Eye Hospital NHS Foundation Trust and UCL Institute of Ophthalmology, London, UK.
Jugnoo S
JS
Rahi
D000293:Adolescent; D000328:Adult; D002648:Child; D005260:Female; D006304:Health Status; D006801:Humans; D010287:Parent-Child Relations; D010290:Parents / Q000523:psychology*; D011788:Quality of Life / Q000523:psychology*; D018434:Sickness Impact Profile; D011795:Surveys and Questionnaires; D014786:Vision Disorders / Q000523:psychology*; D014785:Vision, Ocular / Q000502:physiology*; D014792:Visual Acuity / Q000502:physiology*; D019987:Persons with Visual Disabilities / Q000523:psychology*
Child health (paediatrics); Epidemiology