Determinants of vision-related quality of life of children and young people with visual impairment

Purpose : To investigate the broader individual, family, and environmental factors associated with vision-related quality of life (VQoL) of children and young people with visual impairment (CYP-VI), in order to identify modifiable factors that could be targets for intervention. Methods : Cross-sectional study included 152 CYP-VI aged 7-18 years (visual acuity of logMAR 0.5 or worse, comprising moderate and severe visual impairment and blindness in ICD11) attending 22 Paediatric Ophthalmology Departments in the United Kingdom who participated in the final phase of our programme to develop two vision-specific patient-reported outcome measures (PROMs), Vision-Related Quality of Life (VQoL_CYP) and Functional Vision (FV_CYP) Questionnaires for Children and Young People. CYP-VI self-completed the two PROMs. Associations with family, sociodemographic characteristics (reported by their carers), and clinical factors (derived from their clinical records) were analysed using Spearman’s correlation coefficient, Kruskal-Wallis, Wilcoxon rank-sum tests and quantile regression models. Results : The median VQoL score was 55.58 (IQR=12.06, min=17.08, max=100.00), where higher scores indicate better VQoL. Better VQoL was associated with better FV overall (r=–0.516, p<0.001), parent-reported absence of additional chronic conditions (p=0.010, dCohen=0.457), attending mainstream (versus other) school (p=0.013, dCohen=0.439), higher socio-economic status (r=0.173, p=0.038) and higher parental education level (r=0.201, p=0.018). Other child (gender, ethnicity), clinical (severity of visual impairment, onset of vision loss, rate of vision deterioration), and family (parent’s age, ethnicity, employment status; number of siblings, birth order; siblings and parent’s vision and medical status; housing tenure, cars owned) were not associated with VQoL scores. Final quantile regression model included functional vision (FV) scores and presence of additional health condition. Conclusions : Both clinical characteristics as well as ...