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Survival of infants born with Down's syndrome: 1980-96
S Leonard1, C Bower, B Petterson
1TVW Telethon Institute for Child Health Research, West Perth, WA, Australia. hleonard@cyllene.uwa.edu.au
Insights
Survival rates for Down's syndrome infants in Western Australia have significantly improved since the 1980s, with over 91% surviving their first year. However, disparities persist for Aboriginal children, highlighting ongoing health inequities.
Area of Science:
- Pediatrics
- Genetics
- Public Health
Background:
- Life expectancy for individuals with Down's syndrome has increased due to medical advancements.
- Previous Australian survival data for Down's syndrome dates back to the 1980s.
- There is a need to evaluate current survival trends in the Australian Down's syndrome population.
Purpose of the Study:
- To assess changes in survival rates from birth for infants with Down's syndrome in Western Australia.
- To compare survival trends across different birth cohorts (1980-1996).
- To identify factors influencing mortality in this population.
Main Methods:
- Utilized data from the Western Australian Birth Defects Registry for infants born between 1980 and 1996.
- Obtained survival status through multiple data sources.
- Stratified cases into three cohorts for comparative analysis.
- Employed Kaplan-Meier methods for survival curve construction.
Main Results:
- Survival to 1 year for infants born 1980-1996 exceeds 91%.
- Approximately 85% of infants are expected to survive to age 10.
- Heart disease remained a significant mortality predictor despite improvements.
- Survival rates were poorer for Aboriginal children compared to non-Aboriginal children.
- Females and infants with low birthweight experienced higher mortality.
- No significant survival difference was observed between metropolitan and rural births.
Conclusions:
- Significant improvements in Down's syndrome infant survival have occurred in Western Australia, aligning with international trends.
- The persistent survival gap between Aboriginal and non-Aboriginal children is a critical concern.
- Findings provide valuable information for clinical care and long-term planning for families.
Abstract:
The improved life expectancy of people with Down's syndrome as a result of the greater availability of surgery and advances in medical care has been widely documented. However, there has been no evaluation of survival in the Australian Down's syndrome population since the 1980s. This study aimed to evaluate the changes in survival from birth in cases of Down's syndrome notified to the Birth Defects Registry in Western Australia. Babies born with Down's syndrome between 1980 and 1996 (inclusive) and registered with the Birth Defects Registry were studied. Survival status was obtained in several ways. Cases were stratified into three cohorts for comparison. Survival curves were constructed using the methods of Kaplan and Meier. For infants born during 1980-96, survival to 1 year is now > 91%, and 85% can expect to survive until the age of 10 years. Although survival in those with heart disease showed improvement over the period studied, overall this was still a strong predictor of mortality. Survival in Aboriginal children with Down's syndrome was significantly poorer than in non-Aboriginal children, mirroring the pattern in the general population. Mortality was greater in females and in those with a low birthweight. There was no statistically significant difference in the survival between those born in metropolitan and in rural areas. There has been a considerable improvement in survival of infants born with Down's syndrome in Western Australia. This improvement is similar to findings in recent international studies. The difference in survival between Aboriginal and non-Aboriginal children is particularly disturbing. These findings are useful for both clinicians and families who need to plan for the long-term care of these children.