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Productivity burden borne by the parents of persons with Angelman syndrome

Purpose Angelman syndrome (AS) is a severe neurodevelopmental condition associated with a significant socioeconomic burden. However, no studies have thus far quantified or monetised the parental productivity burden of AS. The present study sought to estimate this burden. Methods The parental productivity burden of AS in Australia was estimated using cost-of-illness modelling with simulated follow-up over a 10-year period using 2019 as the baseline year. This involved estimating the prevalence of persons with AS and their parents, the productivity adjusted life years (PALYs) lost by parents, and the corresponding cost to society. Results The productivity burden borne by the estimated 153 to 1,322 (lower to upper scenario) parents of the 199 to 1,714 persons with AS ranged from 229.6 to 1,980.2 PALYs (discounted). This corresponded to a societal cost (discounted) of AUD$21.0 to $181.2 million, and a loss of 38% of PALYs per-parent. Conclusion AS imposes a significant productivity burden on Australian parents of affected persons, with a large associated impact on the broader economy. These findings are important for informing government planning regarding the supports that should be provided to persons with AS and their families. They will also be important for informing the reimbursement strategy for AS therapies.