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

Abstract

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.