Post-Visual Diagnosis Distress: The Weight of Threatened Sight.

This study estimated the annual cost of X-linked retinitis pigmentosa (XLRP) in the UK at different stages of disease severity. The findings showed that costs increase as the condition progresses, rising from approximately £57,000 per patient with mild XLRP to over £103,000 for severe XLRP. The largest costs were associated with lost productivity for patients and the time spent providing unpaid care by family members. Healthcare costs made up a relatively small proportion of the overall burden. The study highlights the significant financial and personal impact of XLRP on patients and their families, and the need to consider these wider costs when planning support and future treatments.

Aslam, T.M., Ziemssen, F., Loewenstein, A., Daly, A. et al. Post-Visual Diagnosis Distress: The Weight of Threatened Sight. Ophthalmol Ther 15, 1555–1559 (2026). https://doi.org/10.1007/s40123-026-01362-9

Published in Ophthalmology and Therapy, Published: 11 March 2026