Patient perspectives on inherited retinal diseases
Reviewed by Ian Reekie

The authors present a qualitative study of patient perspectives on living with inherited retinal diseases based on social media engagement. Social media posts from 6 sites were analysed over a 10-year period. Data was extracted manually by the research team, and included age at diagnosis, symptoms, effects on health-related quality of life, effects on caregivers and drivers of decisions around genetic testing. Disease effect on emotional wellbeing was the most commonly discussed impact, mentioned by 52.2% of contributors. A key driver of the decision to undergo genetic testing was the hope of future breakthroughs providing treatment options. This study on patient perspectives was limited to patients based in the US, which may skew the specific concerns they have compared to other countries with more socialised healthcare systems. The focus on social media posts may also limit the patient demographic to younger patients who are more likely to be active on those platforms. The concerns of patients with inherited retinal diseases may be expected to change somewhat with age, as many cause progressive visual impairment with time.

Social media-derived patient perspectives on the burden of inherited retinal diseases, including retinitis pigmentosa.
Lee CH, Crawford R, Hickson-Curran S, et al.
OPHTHALMIC GENETICS 
2026;47(1):7–13.