Steep losses in productivity resulting from caring for children with Angelman syndrome totals up to millions
In a groundbreaking study published in the Disability and Health Journal, researchers have estimated the significant impacts of Angelman syndrome on parents' productivity in Australia. The study, titled "Estimating the impact of Angelman syndrome on parental productivity in Australia using productivity-adjusted life years," was conducted by a team of researchers from various Australian universities and clinics.
According to the study, parents of children with Angelman syndrome experience stress, anxiety, and fatigue, which result in lower employment rates compared to the general population. To calculate the productivity losses, the researchers used a mathematical measure called productivity-adjusted life years (PALYs).
The study found that over a 10-year period, the average Angelman mother lost 1.79 PALYs, the average father lost 1.18 PALYs, and the average parent lost 1.5 PALYs. The total economic cost to society over 10 years was estimated at $45.3 million AUD (approximately $30 million USD). This corresponds to a proportional loss of 53.05% for mothers, 25.19% for fathers, and 38.42% for the average parent.
Interestingly, the study also found that fathers of Angelman children had higher rates of full-time employment than men in the general population. However, the lower employment rates among mothers were attributed to lost productivity.
The study's findings could be instrumental in raising awareness of Angelman syndrome, driving investment in therapeutic research and development, and providing critical inputs to government regulatory and reimbursement decision-making.
The study was published in the Journal of Medical Economics, a reputable scientific journal in the field of health economics. It is available for access at https://www.tandfonline.com/doi/full/10.1080/13696998.2020.1747456.
The research team consisted of Daria Oğurtsnik, Elizabeth Emma Palmer, and other researchers from Griffith University, The Children's Hospital at Westmead, University of Sydney, Western Sydney University, Murdoch Children’s Research Institute, Children’s Cancer Institute, Children’s Health Queensland Hospital and Health Service, Sydney Children’s Hospitals Network, and the Royal Australian and New Zealand College of Psychiatrists.
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