Incorporating patient preferences is critical for understanding disease burden and estimating the value of therapeutic interventions. A new study examined how people living with retinitis pigmentosa (RP) value potential treatment outcomes and how these priorities differ from those of the general public.
RP is a progressive and sight-threatening condition with few treatment options. Most patients with RP experience variable progressive vision deterioration, generally leading to legal or total blindness by the fourth or fifth decade of life, which severely affects functioning.
Using an online discrete choice experiment (DCE) completed by 150 patients with RP and 301 members of the public, researchers examined preferences regarding maintaining visual function-related activities of daily living (VF-ADL), such as mobility and reading, as vision deteriorates.
The findings show that patients with RP have different preferences regarding several study treatment outcomes than the general public. Specifically, patients with RP placed greater value than the general public on delaying visual function deterioration and maintaining the ability to get around. Whereas the general public population indicated a higher preference for the ability to get information by reading than patients with RP. In addition, the general public placed more weight on increases in life expectancy when faced with a trade-off in visual deterioration.
These results in the specific area of RP underscore that patients’ perspectives on disease burden and meaningful treatment benefits can differ from those of the general public. Partnering with patients in research to examine their experiences and preferences is an important part of understanding the value of treatment.
This research was funded by Johnson & Johnson and conducted in collaboration with Dr. Kevin Marsh and Myrto Trapali of Evidera, Patient-Centered Research. For full details on the study design, methodology and limitations, see: Marsh K. et al. “Valuing Maintenance of Visual Function in Retinitis Pigmentosa: A Discrete Choice Experiment With Patients and the General Public.” PharmacoEconomics-Open. 2026;doi:10.1007/s41669-026-00638-x.
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