OBJECTIVES: Retinitis pigmentosa (RP) is a rare inherited retinal dystrophy (IRD) that can cause blindness. Data on the burden of visual impairment (VI) due to RP were scarce. This study attempts to determine the socioeconomic impact of RP in Japanese patients.

METHODS: We performed a post-hoc analysis based on the original data collection reported in an online survey to identify the socioeconomic burden of VI and blindness in patients with RP, their caregivers, and other health system stakeholders. 37 caregivers and 118 patients with RP were included. The analysis accounted for a wide variety of costs and included net stakeholder fund transfers and excluded any costs that were duplicative. Results were presented by perspective (e.g., patient-level, government-level, society-level) and by different levels of VI severity and age groups.

RESULTS: It was determined that a patient with RP would have a total average annual societal cost of ¥1,579,864. This was a combination of ¥500,986 in direct costs (healthcare treatment and social welfare payments) and ¥1,078,878 in indirect costs (reductions in patient productivity and caregiver's opportunity costs). Assuming age of onset of 11.2 years and a life expectancy of 84.77 years, the overall lifetime average cost before discounting was calculated at ¥116,230,564 for each RP patient, of which the direct cost was ¥36,857,546. Patients received an average of ¥1,066,013 annually from social welfare payments. The costs to society rose along with the increase in severity of VI. An average burden of ¥1,087,046 was attributed to annual productivity loss. Average productivity (and total) societal costs were higher for working-age populations.

CONCLUSIONS: RP is associated with a significant financial burden from a societal perspective in Japan. Indirect expenditures related to impacts on productivity and opportunity costs were about twice as high as direct costs.