UC Irvine

The recent exponential development of gene-based therapies for the treatment of genetic conditions underpins the importance of understanding the attitudes and information needs of individuals who may soon be eligible for treatment, but existing research is limited. This mixed-methods study explored the attitudes and information needs of affected individuals and caregivers in the inherited retinal disorder (IRD) community specifically. Affected individuals and caregivers (N=689) completed an accessible, anonymous, online survey comprised of validated and a non-validated survey instruments that assessed attitudes and information needs related to gene therapy, vision-related quality of life, and health literacy. The results demonstrate significant optimism and interest regarding gene therapy in the IRD community and show that this interest varies by certain participant demographic characteristics. Participants also reported low self-perceived knowledge about gene therapy and a significant need for information, highlighting an opportunity for education of healthcare providers and patients.