Lost productivity from parenting Angelman children costs millions

Compared to general population, mothers of Angelman children had lower employment rates

Marisa Wexler, MS avatar

by Marisa Wexler, MS |

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Parents of children with Angelman syndrome are less economically productive, which results in millions of dollars of lost productivity for society as a whole, according to a new study in Australia.

“The present study highlights the significant impact that caring for a child with [Angelman syndrome] imposes on parents’ productivity and the broader economy,” the researchers wrote, adding their findings “could be used to inform government decisions regarding the supports that should be provided to persons with [Angelman] and their families.”

Estimating the impact of Angelman syndrome on parental productivity in Australia using productivity-adjusted life years,” was published in the Disability and Health Journal.

Parenting a child with Angelman syndrome presents a number of unique challenges. Angelman parents are prone to stress, anxiety, and fatigue, studies have shown.

There are economic repercussions too. Parents may have to work less to help care for their child and people who are stressed and tired are generally less productive. Scientists in Australia constructed a mathematical model to estimate how much economic productivity is lost by Angelman parents.

“The present study aimed to estimate the total productivity lost by the parents of persons with [Angelman syndrome] over a 10-year period in Australia and the corresponding cost to society,” the researchers wrote, noting studies estimating the economic impact of diseases “can be used to raise awareness of the condition, drive investment in therapeutic research and development, and provide critical inputs to government regulatory and reimbursement decision-making.”

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Lost productivity, lower employment for Angelman mothers

In order to estimate how much economic productivity was lost, the researchers calculated a mathematical measure called productivity-adjusted life years, or PALYs, which reflects how productive the average person in a population is expected to be at a given time on a theoretical scale from none at all to the highest possible productivity.

“PALYs are useful for estimating and communicating productivity impacts because they can be compared across conditions and populations to inform policy and funding decisions,” the researchers said.

To calculate PALYs, the researchers used mathematical models informed by data from previous Angelman studies and from publicly available data for the broader Australian population.

Compared to the general population, mothers of Angelman children had markedly lower employment rates. Fathers of Angelman children had higher rates of full-time employment than men in the general population.

This finding “may be reflective of a productivity impact in reverse, in which fathers remain in full-time employment at greater levels than they otherwise would have,” the researchers wrote. “This may be due to the high costs of raising a child with [Angelman] which are not always covered by government subsidies, and may be associated with mental health and quality of life impacts not captured in the present study.”

Over 10 years, the average Angelman parent lost 1.5 PALYs — 1.79 for the average mother and 1.18 for the average father, results showed. This corresponds to a proportional loss of 53.05% for mothers and 25.19% for fathers, or 38.42% for the average parent.

Taking into account the prevalence of Angelman syndrome and the amount of lost productivity, the total economic cost to society was estimated at $45.3 million AUD (about $30 million USD). That works out to about $137,105.94 (about $91,000 USD) per parent over 10 years. As with PALYs, the estimated amount lost was higher for mothers.

The mathematical models are only able to provide estimations and it’s likely other economic costs associated with Angelman aren’t captured in the model, the researchers said, noting the findings underscore the high economic burden indirectly imposed by the condition, particularly how it makes parents less economically productive.

“This lost parental productivity should be considered when determining the supports that should be provided to persons with AS and their families,” the researchers wrote.