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Purpose: Congenital cataracts are a condition with vision threating potential, and, despite surgical treatment, require intensive follow-up examinations, which places a considerable burden on the affected children and their families. The aim of the study was to quantitatively assess the quality of life of children with congenital cataracts, as well as the burden as perceived by their caregivers in Germany.

Methods: Monocentric observational study with active questionnaire-based data collection including both 5-point Likert-scale items and dichotomous (yes/no) items from caregivers of children with congenital cataracts. Exclusion criteria comprised the presence of additional ocular or systemic diseases.

Results: A total of 86 children diagnosed were included. Although the burden was reduced by the operation, it remained at a high level. Only 45% of caregivers reported being adequately prepared for the postoperative burden. Functional limitations were present in one-third of the children with a need for support and/or assistive devices and reported difficulties both in reading from the board and in participating in sports. Regular medical appointments represented the greatest challenge for parents. Only 45% of caregivers stated that they had adequately anticipated the postoperative burden.

Conclusions: The management of congenital cataract places a burden on affected families in several respects. Families must be informed at an early stage about the complex aftercare process and the resulting burden. Support services similar to those provided for chronic illnesses should be made available.