Estimating the impact of Angelman syndrome on parental productivity in Australia using productivity-adjusted life years

Abstract

Background: Angelman syndrome (AS) is a rare genetic condition characterized by global developmental delay, including severe intellectual disability. The parents of persons with AS experience increased stress, anxiety, and depression. This impacts parents' career choices and productivity.

Objective: To estimate, for the first time, the total productivity lost by the parents of persons with AS over a 10-year period in Australia and the corresponding cost to society.

Methods: A cost-of-illness model with simulated follow-up over a 10-year period was developed, with 2019 as the baseline year, facilitated by a Markov chain of life tables. The prevalence of persons with AS and their parents, the productivity-adjusted life years (PALYs) lost by parents, and the cost to society were estimated. Key data were obtained from a prospective cohort of AS families, peer-reviewed literature, and publicly available sources.

Results: The base-case productivity burden borne by the estimated 330 living parents of the 428 prevalent persons with AS totaled AUD$45.30 million, corresponding to a loss of 38.42% of PALYs per parent.

Conclusions: Caring for a child with AS has a significant impact on the productivity of affected parents, with a large associated impact on the broader Australian economy.

Keywords: Angelman syndrome; Cost-of-illness; Economic impact; Intellectual disability; Parents; Productivity burden.