Down syndrome survival and hospitalisation rates


To describe survival and patterns of hospitalisation for children and young people with Down syndrome in Scotland over a 25 year period.

What we did

All four Scottish regional cytogenetic laboratories identified live-births of individuals with Down syndrome born 1990-2015. They were each age-gender-deprivation matched with 5 general population (non- Down syndrome) controls, using Scotland’s unique NHS identifier system (CHI). Individuals were linked to routinely collected hospital statistics data (Scottish Morbidity Records 01), and also to National Records of Scotland data on deaths.

What we found

1,458 people were identified with Down syndrome, 689 females (47.3%) and 769 males (52.7%). 1,162 (78.5%) with Down syndrome had been admitted to hospital at least once, compared to 3,362 (52.1%) controls. Average hospital stay was 3.5 days for people with Down syndrome and 1.6 days for controls. In total, 96 (6.6%) people with Down syndrome died during the study period compared to 23 (0.4%) people without Down syndrome. This data is currently being further analysed.

What these findings mean

Children and young people with Down syndrome are at high risk of experiencing hospitalisation, highlighting need for family support. Our findings will provide current data on survival trends and access to health service care for children and young people with Down syndrome.

Link to publication

Page updated 6 October 2020