Reflections on emerging therapies for inherited retinal diseases following a community education event: A qualitative exploration
Eden G. Robertson, Jorden Hua, Kate Hetherington, Michelle O’Hara‐Wright, Anai Gonzalez‐CorderoABSTRACT
Purpose
To explore the inherited retinal diseases (IRD) communities' attitudes and perspective toward emerging therapies—specifically gene therapy, cell therapy, and retinal prostheses—following a community education event.
Methods
At an in‐person half‐day IRD community education event, subject‐matter experts presented the scientific foundations and current research developments related to these therapies. Following presentations, we invited attendees with lived experience to participate in an audio‐recorded focus group to share their views and reflect on information presented. We conducted a thematic analysis of the focus group transcriptions to identify key themes. Our study was informed by a relativist ontology and constructivist epistemology.
Results
We conducted three focus groups, totaling 10 people with IRD and seven caregivers. Our analysis yielded four themes: (1) The drive for therapy, describing the burden of IRD and desire for any therapy; (2) navigating hope and uncertainty, highlighting the emotional complexity of disease progression and need to balance hope with realistic expectations; (3) personalized communication, emphasizing the value of tailored communication from trusted health professionals; and (4) transparency in information sharing, underscoring the importance of ongoing research updates.
Conclusions
Our participants shared a strong desire for effective treatment, regardless of the therapeutic approach. Limited options and anticipated timeline to develop gene‐specific therapies led many to view gene‐agnostic approaches as more viable within their lifetime. Ongoing research updates were deemed valuable for fostering acceptance of emerging therapies and supporting treatment decision‐making.