Paediatric visual impairment in Western Australia: Results and lessons from a registry analysis

J Paediatr Child Health. 2024 Oct 25. doi: 10.1111/jpc.16709. Online ahead of print.

Abstract

Aim: Clinical registries are an important research tool to enhance our understanding of vision loss in the Australian paediatric population. We aim to provide an update on the epidemiology of visual impairment among Western Australian children using registry data analysis, and to highlight the challenges of registry data collection.

Methods: This is a retrospective study of visual impairment and blindness registrations of children aged 0-16 years in Western Australia from 1996 to 2015. Blindness was defined as visual acuity ≤6/60 in the better-seeing eye or binocular visual field ≤20° diameter, with all other certifications labelled as visual impairment. Certificates were assessed for primary causes of vision loss by age strata and sex. Registration rate trends were analysed across three discrete registration periods.

Results: Of 11 800 certificates issued between 1996 and 2015, 728 certificates (6.2%) were issued to 710 children. Five hundred and twenty-nine (74.5%) certificates were issued for visual impairment and 181 (25.5%) for blindness. The leading cause of certification was inherited retinal disease (73, 10.3%), followed by cortical visual impairment (57, 8.0%) and albinism (56, 7.9%). The annual registration rate of visual impairment increased from 0.5 to 9.8 per 100 000 person-years across the study period, whereas blindness rates fell from 2.7 to 1.3.

Conclusions: Overall registration rates of paediatric visual impairment in Western Australia are increasing, but these trends should be interpreted with caution given the known limitations of registry data. Enhancements of the registration process could be achieved through digitisation, inclusion of patient outcome data, and incentives for greater practitioner engagement.

Keywords: blindness; childhood; inherited retinal disease; registry; visual impairment.