The socioeconomic impact of inherited retinal dystrophies (IRDs) in the United Kingdom

Summary

Retina International on behalf of the IRD COUNTS consortium engaged Deloitte Access Economics to estimate the disease burden and economic impact of IRDs in the UK and RoI from a societal perspective – a cost-of-illness study. This approach involves estimating the number of people with IRDs in a base period (2019) and the costs attributable to IRDs in that period.

The socioeconomic burden of inherited retinal dystrophies (IRDs) in the United Kingdom and Republic of Ireland was estimated using best practice cost-of-illness methodology applying a prevalence approach. The analysis was based on data collected in a targeted literature review and primary (survey) data collection.

This analysis found that:

• The overall prevalence of IRDs was estimated to be 0.03% which represented 20,814 cases in the UK and 1,522 cases in the RoI, in 2019.
• IRDs imposed significant economic and wellbeing costs on the UK and RoI population in 2019.
• Total costs attributable to IRDs in the UK were estimated to be £523.3 million in 2019, comprising both economic costs (£327.2 million) and wellbeing costs (£196.1 million).
• Total costs attributable to IRDs in the RoI were estimated to be €49.5 million in 2019, comprising both economic (€33.5 million) and wellbeing costs (€16.0 million).
• Wellbeing costs comprised the largest share of total costs, followed by productivity costs.
• Of the ten IRDs within scope, retinitis pigmentosa (RP) incurred the greatest proportion of total costs, followed by Usher syndrome and Stargardt disease.
• Of those people surveyed as an input to this analysis, the majority of persons living with an IRD (73.2%) and the parents of children (under 18) living with an IRD (75%) were frustrated by the lack of awareness and support for IRDs.