TRENDS IN AGING FOR PEOPLE WITH DOWN SYNDROME: A 56-YEAR COHORT STUDY IN WESTERN AUSTRALIA

In high income countries the life expectancy of people with Down syndrome (DS) rose significantly during the 20th century, from around nine years in 1949 to 57 years by 2000, equating to an increase of approximately 1 year of age per calendar year. This presentation quantifies survival patterns for people with DS using comprehensive population-based data collected over a 56-year period (1953–2009). All known persons diagnosed with DS were sourced from four complementary health and disability State-based databases (Disability Services, Death Registrations, Hospitalisations and Birth Defects Notifications) in Western Australia. Survival to 2010 was confirmed by the absence of a death registration between 1969 and 2010. Life expectancy was assessed using Kaplan Meier survival using the 1,948 cases born since 1953, which ensured that no death records were lost prior to the start of the earliest database. Deaths had occurred in 590 cases (25.3%). The results showed that survival rates started to decline between 55–60 years of age. Gender disparity was apparent, with females observed to have a slightly lower mean survival age than males throughout the lifespan. Although major improvements in the survival of children with DS are evident in recent decades, overall life expectancy appears to have plateaued with only minor increases in more recent years. The study findings suggest the possibility of a current natural upper survival limit for people with DS of around 60 years of age, and/or gaps in addressing health needs later in life through appropriate screening and early treatment.