Objectives: This study aims to evaluate the effect of congenital ectopia lentis (CEL) on functional vision and eye-related quality of life (ER-QOL) in children and their families using the Paediatric Eye Questionnaire (PedEyeQ).
Design: A questionnaire survey administered via in-person interviews of patients with CEL and their parents.
Participants: 51 children with CEL and 53 visually normal controls accompanied by 1 parent completed the survey questionnaires for the study from March 2022 to September 2022.
Outcome measures: PedEyeQ domain scores. Functional vision and ER-QOL of children and their families were evaluated by calculating and comparing the Rasch domain scores of the PedEyeQ.
Results: PedEyeQ domain scores were significantly worse with CEL compared with controls (p<0.01 for each), with the exception of the Proxy Social domain among children aged 0-4 years (p=0.283). Child PedEyeQ greatest differences were in the functional vision domain (5-11 years, -20 points (95% CI -27 to -12)) and frustration/worry domain (12-17 years, -41 (95% CI -37 to -6)). Proxy PedEyeQ greatest differences were in the functional vision domain (0-4 years, -34 (95% CI -45 to -22)) and frustration/worry domain (5-11 years, -27 (95% CI -39 to -14); 12-17 years, -37(95% CI (-48 to -26))). Parent PedEyeQ greatest difference was in the 'worry about child's eye condition' (-57 (95% CI (-63 to -51))).
Conclusions: In this study, children with CEL had reduced functional vision and ER-QOL compared with controls. Parents of children with CEL also experience reduced quality of life.
Keywords: OPHTHALMOLOGY; Paediatric ophthalmology; Patient Reported Outcome Measures; Quality of Life.
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