Living longer and stronger: Are children and young adults with Down syndrome experiencing healthier and better lives?

Down syndrome (DS) is the most common genetic cause of intellectual disability and is associated with multiple medical conditions affecting various organ systems, impacting the individual’s health, development and function.1 In Singapore, the life-birth prevalence of DS was 0.89 per 1000 births in the 1990s, a figure expected to decline further due to improved antenatal testing methods, despite the increasing trend in maternal age.2 Advances in medical technology, including surgery for complex congenital heart disease, have extended the life expectancy of individuals with DS to around 60 years.3 Although global life expectancy and disability-adjusted life years for individuals with DS have remained largely stable, the overall disease burden has increased due to longer years lived with disability. From 2010 to 2019, the estimated annual percentage increase in years lived with disability was 1.07 years.4 Therefore, it is essential for service providers to shift their focus from merely prolonging life expectancy to improving the quality of life (QOL) for individuals with DS, which is the focus of the study by Chan et al. published in this issue of the Annals.5