Patient experience in retinitis pigmentosa and Choroideremia– a concept elicitation study in 17 patients based on qualitative interviews
The patient interviews provided insight into the patient experience of RP and CHM and formed the basis for developing a combined conceptual model of RP and CHM disease experience, suitable to serve as basis for future patient reported and performance outcome measures. Testing in larger samples, especially in CHM, is recommended to further evaluate content validity of these preliminary findings.
Authors
- Benoît Blanchard
- Isabelle S. Audo (ORCID: https://orcid.org/0000-0003-0698-5309)
- Eckhart Eule
- José-Alain Sahel
- Isabel Bachmeier (ORCID: https://orcid.org/0000-0002-9022-2592)
- Per-Olof Thuresson
- Elke Rometsch
- Noémie Hurst
Institutions
- Roche (Switzerland) (CH)
- Centre National de la Recherche Scientifique (FR)
- Institut de la Vision (FR)
- Inserm (FR)
- University of Pittsburgh (US)
- Centre hospitalier national d'ophtalmologie des Quinze-Vingts (FR)
- Sorbonne Université (FR)
Publication Details
- Journal
- Orphanet Journal of Rare Diseases
- Published
- 2025-08-11
- DOI
- https://doi.org/10.1186/s13023-025-03713-4
- Citations
- 1
- Primary Topic
- Retinal Development and Disorders
- Type
- article
- Field-Weighted Citation Impact
- 0.81
Funders
- Roche
- F. Hoffmann-La Roche