The health-related quality of life of children with congenital cataract: findings of the British Congenital Cataract Study

.. Background: There is increasing emphasis on patient- based assessment of healthcare outcomes, but evaluation of the impact of ophthalmic disorders on quality of life is undertaken infrequently. Aim: To report on the health- related quality of life ( HRQOL) of children with congenital cataract. Methods: At least 6 years after diagnosis, 41 children ( representative of a national cohort) and their parents completed the child and proxy ( parental) versions of PedsQL 4.0, a generic multidimensional paediatric HRQOL instrument, independently. This provided a physical health summary score, a psychosocial health summary score and an overall score ( range 0 - 100, higher scores indicating better HRQOL). Results: Questionnaires were completed by 33 parent - child pairs and by 8 parents alone. The mean ( SD) total score self-reported by children was 75.85 ( 15.56) and that reported by parents was 75.91( 16.79). The mean ( SD) physical health score self- reported by children was 80.76 ( 8.61), which was higher than the psychosocial health score of 72.93 ( 16.06). There was considerable variation in agreement of scores reported by individual child - parent pairs ( the largest difference was 56.3 points). Notably, the PedsQL scores of children with congenital cataract were comparable with those reported for some children with severe systemic diseases such as rheumatological disease and some cancers. Conclusions: These findings serve to characterise the significant broader impact of congenital cataract on patients and their families. The PedsQL 4.0 proved to be an acceptable instrument for assessing generic HRQOL, permitting valuable reporting by children and their parents. However, to capture the subjective experience of ophthalmic disease in childhood fully, specific vision- related quality of life measures for children are needed.