Social media-derived patient perspectives on the burden of inherited retinal diseases, including retinitis pigmentosa.

BACKGROUND

Retinitis pigmentosa (RP) and many other inherited retinal diseases (IRDs) cause progressive retinal degeneration and eventual blindness, significantly impacting patients' health-related quality of life (HRQoL). Social media (SM) can provide valuable, real-world insights into patient and caregiver perspectives on disease burden and treatments.

METHODS

This study analyzed publicly available, English-language SM posts from US-based patients or caregivers between 2013 and 2023 to understand the burden of living with IRDs (including RP) and perceptions of genetic testing and gene therapies.

RESULTS

A thematic analysis of 140 SM posts from 115 contributors showed that symptoms (eg, night blindness, decreased peripheral vision, visual acuity) were discussed by 68 contributors (59.1%). Key aspects of HRQoL impacted included emotional well-being (52.2%), difficulty in daily activities (43.5%), careers (25.2%), relationships (24.3%), and independence (20.9%). Four contributors (3.5%) mentioned the burden on caregivers. Discussions on treatments for IRDs were shared by 41 contributors (35.7%), including thoughts about gene therapy. Genetic testing was discussed by 17 contributors (14.8%), including drivers for testing (eg, fear of passing on the condition to children and eligibility for gene therapies).

CONCLUSION

SM provided valuable insights into the burden of IRDs and highlighted significant patient interest in restorative treatments and gene therapies.