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PSS6 WHAT IS THE LIFETIME COST OF BLINDNESS IN PEOPLE WITH RPE65-MEDIATED INHERITED RETINAL DYSTROPHY IN THE UK?
Objectives
RPE65-mediated inherited retinal dystrophy (IRD) is a rare genetic disease that causes progressive vision loss, ultimately leading to complete blindness. Current estimates of the cost of blindness are typically available in populations for whom blindness occurs later in life, who may be expected to incur different types of cost over a shorter time period. This analysis aimed to estimate the full lifetime cost of blindness in individuals with RPE65-mediated IRD in the UK.
Methods
A targeted literature review was conducted to identify UK costs and resource use associated with blindness, supplemented by an IRD-specific analysis of Hospital Episode Statistics data and a patient focus group; the Royal National Institute of Blind People definition of blindness was used. Costs were categorised according to age group (<18 years, 18-65 years, >65 years). Costs incurred by the healthcare, education and welfare systems, patients, caregivers and charities were considered, in addition to the costs of patient and caregiver productivity loss. Lifetime costs associated with blindness were calculated assuming onset of blindness at either 3 or 18 years, and life expectancy as for the general population.
Results
The lifetime cost of blindness is estimated to be £1,774,318 or £1,553,203 assuming onset of blindness at 3 or 18 years, respectively. Approximately 70% of lifetime costs are associated with lost productivity, with 20% of costs incurred by the healthcare system. These figures do not include some costs of blindness which could not be quantified, including GP visits, specialist equipment and adaptation (e.g. specialist toys) and additional household expenses (e.g. cleaning services), and do not include costs associated with visual impairment prior to blindness.
Conclusions
The lifetime cost of blindness in individuals with RPE65-mediated IRD in the UK is substantial (∼£2 million), and the modelled estimate is likely to be conservative, as it was not possible to quantify all cost categories.
Authors
D Viriato, F Glen, N Bennett, C Aouadj, E Hancock, H Lomax, R Sidhu
Journal
Value in Health
Therapeutic Area
Ophthalmology
Center of Excellence
Patient-Centered outcomes, Real-world Evidence & Data Analytics
Year
2019
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