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Val Tadic, Phillippa Cumberland, Gillian Lewando Hundt, Jugnoo S. Rahi, Vision-related Quality of Life (VQoL)Group; Child- And Parent-reported Vision-related Quality Of Life Using A Novel Questionnaire. Invest. Ophthalmol. Vis. Sci. 2011;52(14):6334.
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In recognition of the importance of patient-reported assessment of health outcomes, we are developing a novel self-report Vision-related Quality of Life instrument for Children and Young People (VQoL_CYP) with visual impairment (VI). We report findings from a preliminary pilot about variation in child-reported VQoL by demographic and clinical characteristics, and parent-child disagreement in reporting the child’s VQoL.
VQoL_CYP was completed by 71 children with VI (acuity in better eye<6/18) aged 10-15 years without other significant impairments and 65 parents. Internal consistency was examined for 3 conceptually derived domains (D1: Social, 19 items; D2: Independence, 13 items and D3: Psychological, 15 items). Items with low item-total correlations (<0.3) were removed to create summary subscale scores (transformed to a 0-100 scale). Within-group differences were examined using independent-samples t-tests and parent-child agreement by the Bland-Altman method.
52% children were girls; 42% aged 10-12 yrs; 14% severely VI or blind; 83% had early onset and 56% progressive VI. Internal consistency was high across the subscales for both children and parents (Cronbach’s alpha values >0.85). Higher VQoL on average was reported by boys, younger children, those with less severe, early onset or progressive VI, though differences were not statistically significant. Average parental assessments of child’s VQoL were slightly lower than child-reported VQoL, but the range of disagreement was wide (D1: mean difference =5.1 [range of difference: -36,61]; D2: 2.8[-42,53];D3: 2.3[-39,50]).
Our pilot data indicate self-reported VQoL in children may be influenced by demographic factors as well as the nature of the VI. The potentially wide disagreement between child and parent assessment of child’s VQoL is consistent with the broader literature on QoL and emphasizes the importance of capturing both perspectives for gauging the impact of VI on the child and their family.
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