OBJECTIVES: The systematic literature review (SLR) aims to investigate the global economic burden of Retinitis Pigmentosa (RP).

METHODS: Embase^® and MEDLINE^® databases were searched to identify cost-burden studies conducted in patients with RP published between 2009 to 2024 (last 15 years). The review followed a standard two-review and quality control process.

RESULTS: The SLR included a total six studies conducted across the United States (US) (n=2), Japan (n=2), Spain (n=1), and globally (US and Canada, n=1). The estimated total annual costs for RP patients in the US, using the point prevalence rate, ranged from US$ 3,708.4 to US$ 8,790.6 million (sample size: 50,991 to 121,213) and CAN$ 452.5 to CAN$ 1,847.5 million (sample size: 5,841 to 23,891) in Canada. RP patients had significantly higher mean annual total direct healthcare costs than non-RP group (US$ 14,988 vs. US$ 9,965, p<0.001), primarily driven by outpatient costs (US$ 10,589 vs. US$ 6,791). Disability and visual impairment (VI) among RP patients were associated with higher total lifetime mean costs compared to those without disability (US$ 2,314,495 vs. US$ 584,800). In Japan, the total annual mean cost for RP patients was 218,520 yen, with a lifetime mean cost of 18,523,909 yen. Formal care was the major contributor to annual costs (191,666 yen, 87%). The mean annual total societal cost for RP patients was 1,579,864 yen, with indirect costs (productivity loss; caregiver costs) comprising 68.2%, nearly double the direct costs. In Spain, the mean annual cost for low-vision aids/adaptations among RP patients with VI or blindness was €16,056.5, primarily related to optical aids, with caregivers incurring an annual mean indirect cost of €1,040.9.

CONCLUSIONS: The SLR underscores the substantial economic burden associated with RP, revealing high healthcare costs across the globe. The formal care or indirect costs were the major contributor towards the higher cost incurred by the RP population.