Prevalence and incidence of mental health disorders in patients with inherited retinal diseases: a population-based study.

Document Type

Article

Publication Date

5-20-2026

Publication Title

Journal of AAPOS : the official publication of the American Association for Pediatric Ophthalmology and Strabismus / American Association for Pediatric Ophthalmology and Strabismus

Abstract

PURPOSE: To characterize the prevalence and incidence of mental health disorders in pediatric patients with inherited retinal diseases (IRDs).

METHODS: This retrospective cohort study utilized the TriNetX research network to identify, using ICD-10 codes for retinal dystrophies, 74,317 unique IRD patients (16% pediatric) between January 2016 and December 2024 with at least 6 months' follow-up after diagnosis.

RESULTS: Anxiety disorders were most prevalent (24.6%). In pediatric patients, anxiety disorders affected 15.3%, and major depression affected 7.7%. Mental health burden increased progressively during adolescence, with anxiety rising from 8.2% in early childhood to 21.4% in late adolescence. Among pediatric patients, Black children demonstrated 2.5-fold higher rates of mental health disorders compared with White children (38.4% vs 15.2%).

CONCLUSIONS: This large-scale analysis of mental health in IRDs provides the first population-based characterization of the mental health burden across the IRD spectrum, including in pediatric patients. These findings underscore the need for integrating standardized mental health screening protocols into routine IRD management.

First Page

104860

DOI

10.1016/j.jaapos.2026.104860

ISSN

1528-3933

PubMed ID

42167533

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