OBJECTIVES: To evaluate the healthcare resource utilization and costs in patients with non-syndromic retinitis pigmentosa (RP).

METHODS: A systematic literature search was performed in Ovid MEDLINE and EMBASE databases. In addition, bibliographic searches of relevant review articles were conducted to identify relevant studies. No language or date limitations were applied.

RESULTS: A total of seven studies were included. Significantly greater mean annual total health care costs were reported in RP patients compared to those without RP (mean, $14,988 vs. $9,965; p<.001). Patients with RP had significantly more outpatient physician/clinic visits compared to those without RP (mean, 7.81 vs. 5.28; p<.001). The number of prescriptions filled was also significantly higher in the RP group (mean, 19.30 vs. 17.70; p<.001). However, there was no difference for inpatient hospital admissions and emergency department visits. Four studies reported the cost data for Argus II retinal prosthesis system. The Base-case discounted or mean total costs of Argus II retinal implant ranged between $271,351 and $537,734. One recent study reported the cost data for USFDA approved one time gene-therapy, voretigene neparvovec-rzyl. In the base-case (lifetime treatment effect), voretigene neparvovec-rzyl was associated with total costs of $2.2 million, direct costs of $0.85 million, and indirect costs of $1.06 million. The bilateral dose of voretigene neparvovec-rzyl was associated with a significant financial burden ($850,000). A cost of illness study that used patient-centric approach found that travel to appointments, specialist equipment, loss of employment for patients and carers, and domestic resources (including childcare, cooking, cleaning, home adaptations) were the most significant areas of financial burden in RP patients.

CONCLUSIONS: This systematic review presents a complete up-to-date overview of the existing studies related to healthcare resource utilization and costs associated with non-syndromic RP. The findings demonstrate significantly greater resource use and higher healthcare costs in RP patients.