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The aim of this study was to evaluate lifetime income, educational level and workforce participation in patients with childhood-onset inherited retinal dystrophies (IRD). The registry-based study using national, Danish databases on education, income, employment and social benefits in a cohort of 515 patients with childhood-onset IRD and without severe systemic comorbidities matched 1:4 to an age- and sex to a control sample of the Danish background population. Socio-economic status was modelled with focus on grade mark points after primary education, highest attained education at 30 years or age, employment and unemployment rate, disability pension and lifetime income. At 30 years of age, the proportion of those who had primary education as the highest achieved level was higher in the IRD group (35.4% versus 18.7%) and they were more likely to be receiving a disability pension (OR 11.77) or be unemployed (OR 6.63). Those at work had the same number of work hours as the control group, and the same proportion had obtained a Master or PhD degree (14%). At 30 years of age, income earnings were lower in the IRD group and the lifetime income was reduced by 30%. A few among those with childhood-onset IRD were able to obtain high educational levels, and many were assigned a disability pension from early adulthood or were unemployed, resulting in a markedly reduced lifetime income although grade mark points from primary education were comparable, suggesting that the difference was not explained by intellectual differences between the groups.

Childhood-onset retinal dystrophies reduces life-time income by one third - an individual based socio-economic analysis