New study highlights societal burden of inherited retinal diseases

A new study highlights the substantial economic impact of inherited retinal diseases (IRDs) across different countries, emphasizing the predominance of non-health costs and the importance of considering societal costs in evaluating the effectiveness of interventions. The study calls for a comprehensive approach involving governments, healthcare leaders, and researchers to allocate resources effectively and prioritize initiatives aimed at supporting individuals and families affected by IRDs.

The study conducted a comprehensive literature search to identify cost-of-illness (COI) studies related to IRDs. Researchers meticulously analyzed 9 eligible studies, primarily focusing on patients with IRDs and estimating the associated costs with detailed methodology.

Results from the study showcased the substantial economic impact of IRDs across different countries. In Singapore, the mean total cost per patient stood at approximately US$6926 per year, while in Japan, it soared to US$20,833 annually. The United Kingdom reported a range of US$21,658 to US$36,549 per patient per year. In stark contrast, the United States witnessed per-patient costs ranging from US$33,017 to US$186,051 annually. Canada reported a variation between US$16,470 and US$275,045 per patient per year.

Of note, non-health costs outweighed healthcare expenses significantly, constituting 87-98% of the total costs. These non-health costs encompassed factors like diminished quality of life, financial strain leading to poverty, and increased informal caregiving needs for affected individuals.

Reference
Ng QX, Ong C, Yaow CYL, et al. Cost-of-illness studies of inherited retinal diseases: a systematic review. Orphanet J Rare Dis. 2024;19(1):93. doi: 10.1186/s13023-024-03099-9. PMID: 38424595; PMCID: PMC10905859.