Study reveals impact of inherited sight loss on wellbeing and productivity

Posted on: Thursday 5 September 2019

The findings of a pilot study into the burden of Inherited Retinal Disease (IRD) on the wellbeing and productivity of those affected have today been announced at EURetina in Paris.

The report was commissioned by IRD COUNTS, a patient-led multi-stakeholder consortium, initiated by Retina UK and managed by Retina International.

The study set out to estimate, via a cost-of-illness approach, the disease burden and economic impact of IRDs in the Republic of Ireland and United Kingdom (UK) from a societal perspective.

Tina Houlihan, Chief Executive of Retina UK, said: “Retina UK and our collaborators are concerned that the prevalence and impact of IRDs at a national and global level is largely undocumented. The lack of data in this area hinders the development and commissioning of clinical services, treatments, and the planning and implementation of clinical treatment trials. This is why this pilot study is so important.”

This pilot relates to ten forms of IRDs: Retinitis Pigmentosa, Usher Syndrome, Stargardt, Disease, LCA/EOSRD, Best Disease, Cone Dystrophy, Cone-Rod Dystrophy, Achromatopsia, Choroideremia and X-Linked Retinoschisis.

The findings show that in both the Republic of Ireland and UK the impact on the wellbeing and productivity of the affected individual and their families was significant.

Wellbeing costs, which refer to the years of quality of life lost due to IRDs, were responsible for 38.4% (£196.1million) of total IRD costs in the UK.

Productivity costs, which refer to reduced workforce participation, absenteeism and presentism, were the second highest cost burden due to IRDs in the UK amounting to £114.1million.

People living with an IRD in the UK were 40.2% less likely to be in paid employment than the general population and IRDs resulted in a 9.6% reduction in productivity while at work.

In both the Republic of Ireland and the UK the cost attributed to healthcare was relatively low, suggesting that those with a vision impairment do not engage as frequently with health care professionals as they do with those providing social and psychosocial supports.

Tina Houlihan commented: “Most Health Technology Assessments (HTA) that determine the cost-effectiveness of new treatments do not take these complex factors into consideration, making it difficult to incorporate the true cost of these diseases into decisions around reimbursement. IRD COUNTS aims to remove this potential barrier to treatment availability.”

The consortium is considering its next steps.

The full report is available on the Retina International website.


IRD COUNTS is a patient led initiative and is made up of F Hoffmann La Roche, Fighting Blindness Ireland, MeiraGTx, Novartis UK Ltd, ProQR, Retina UK, Thomas Pocklington Trust. All partners were equal funders of the project.

IRD COUNTS was initiated by Retina UK and is managed by Retina International.