Abstract
Purpose :
RPE65 mutation-associated inherited retinal dystrophy (IRD) is a rare genetic disease with progressive vision loss that eventually leads to near-total blindness. An understanding of the cost of blindness is an important decision-making factor for better disease management. There are limited data estimating the costs incurred for early-onset blindness in the United Kingdom (UK). This study aims at providing an estimate of the lifetime cost of blindness in patients with RPE65 mutation-associated IRD in the UK.
Methods :
A targeted literature review, analysis of Hospital Episode Statistics data and a patient focus group were used to identify costs and resource use associated with blindness in the UK. The Royal National Institute of Blind People definition of blindness was adopted. Costs incurred by healthcare, education and welfare systems, patients, caregivers, and charitable organizations were included. Costs due to productivity loss for patients and/or caregivers were also considered. Costs were categorized based on age (<18 years, 18–65 years, >65 years). Lifetime costs were calculated for the onset of blindness at 3 or 18 years of age. Life expectancy was based on the available data for the general population.
Results :
The lifetime cost of blindness was estimated to be £1,774,318 and £1,553,203 for the onset of blindness at 3 and 18 years, respectively. 69.4% (18 years) and 66.1% (3 years) of lifetime costs were associated with lost productivity, while 20.4% (18 years) and 18.7% (3 years) of costs were incurred by the healthcare system. Some costs could not be captured, including the costs of general physician visits, specialty equipment and adaptation (e.g. specialist toys), and additional household expenses (e.g. cleaning services). Any cost associated with visual impairment prior to blindness was not included. Patient and caregiver costs referred to out-of-pocket costs that were subjective and related to the patient’s condition.
Conclusions :
The lifetime cost of blindness in patients with RPE65 mutation-associated IRD in the UK is substantial (£1.6–1.8 million), and the modelled estimate is likely to be conservative as it was not possible to quantify all cost categories. Blindness due to RPE65 mutation-associated IRD has a significant socioeconomic implication for due consideration by relevant stakeholders.
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This is a 2020 ARVO Annual Meeting abstract.