Abstract
Purpose :
Accurate data regarding prevalence of Inherited Retinal Diseases (IRDs), impact on individuals and families affected, and cost burden to the USA and Canadian economies was lacking. This hinders research, development and commissioning of clinical services, treatments, care pathways and clinical trials. Thus there is a need for a stronger evidence base to support value-for-money to regulatory bodies for treatments approved, and treatments progressing through clinical trials. To safeguard future research and service provision it was necessary to learn more about the IRD community.
Methods :
The socioeconomic burden of IRDs in the USA and Canada was estimated using a cost of illness methodology applying a prevalence approach. Patient involvement was incorporated throughout project design and review. Analysis was based on targeted literature review and primary data collection (survey) of adults aged 18+, and parents of children (under 18) living with one of the following IRDs: Achromatopsia, Bardet-Biedl Syndrome, Best Disease, Blue Cone Monochromacy, Choroideremia, Cone Dystrophy, Cone-Rod Dystrophy, Leber Congenital Amaurosis (LCA), Leber Hereditary Optic Neuropathy (LHON), Retinitis Pigmentosa, Rod-Cone Dystrophy, Stargardt Disease, Usher Syndrome, and X-Linked Retinoschisis (n=687 USA; n=151 Canada).
Results :
The greatest cost type in both countries was attributed to wellbeing and accounted for 63% (up to US$20.043 billion), and 66% (CAN$1.071 billion) of total IRD costs in the USA and Canada respectively. Productivity losses were the second highest burden in both the USA and Canada, amounting to US$4.056 billion, and CAN$205.1 million. Persons with an IRD in the USA and Canada were 28.8% and 24.4% less likely to be in paid employment than the general population. In the USA and Canada IRDs resulted in a 0.3% and 1.4% reduction in productivity while at work respectively. The health systems cost in both regions was low at US$2.216 billion and CAN$37.8 million respectively.
Conclusions :
The highest costs incurred due to IRDs were attributed to well-being and loss of productivity, yet those affected by IRD do not regularly engage with health care systems. The data demonstrates clearly that the measurements used to assess the burden of vision loss need urgent review. The wellbeing of those living with an IRD is currently underserved and under resourced, and there is an urgent need for equality in accessing the workforce.
This is a 2021 ARVO Annual Meeting abstract.