Background
The aim of this study was to describe survival and patterns of hospitalisation for children and young people with Down's Syndrome in Scotland over a 25 year period.
Down's Syndrome survival and hospitalisation rates
What we did
All four Scottish regional cytogenetic laboratories identified live-births of individuals with Down's Syndrome born 1990-2015. They were each age-gender-deprivation matched with 5 general population (non- Down's 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's Syndrome, 689 females (47.3%) and 769 males (52.7%). 1,162 (78.5%) with Down's 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's Syndrome and 1.6 days for controls. In total, 96 (6.6%) people with Down's Syndrome died during the study period compared to 23 (0.4%) people without Down's Syndrome.
What these findings mean
Children and young people with Down's Syndrome are at high risk of experiencing hospitalisation, highlighting a 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's Syndrome.
Group members involved with this study
Dr Laura Hughes
Laura is a Lecturer in Clinical Psychology at the University of Glasgow, and an affiliate of the Scottish Learning Disabilities Observatory, having joined the team in 2015. With the Observatory, Laura was involved in projects looking at the health of people with learning disabilities in a number of large data-sets, including primary health care records, Scotland's 2011 Census and health records of people born with Down Syndrome in Scotland over a 25 year period. Laura studied Psychology and has extensive experience of working with people with learning disabilities in her previous roles, for example, as a Befriender, a Learning Assistant and an Assistant Psychologist. Read more about Laura at the link below
Professor Anna Cooper
Anna set up the Scottish Learning Disabilities Observatory with funding from the Scottish Government. She wants the Observatory to make Scotland fairer and healthier for people with learning disabilities and their families, by: Finding out the health problems people have Finding out how good or bad health care is Telling people about health and health care problems Finding ways to make health and health care better Checking if health gets better or worse over time Helping the Scottish Government, and staff who provide health and social services, to get it right for people with learning disabilities Anna is a doctor. She has done a lot of studies on the health of people with learning disabilities. Anna’s full name is Professor Sally-Ann Cooper.
Angela Henderson
Angela was formerly the Director for Policy and Impact for the Scottish Learning Disabilities Observatory and remains an affiliate team member, having moved in 2024 to work with the Scottish Government leading the development of annual health checks and learning disabilities data. Angela is interested in how evidence is used in policy making and was involved in many projects at the Observatory. These included: Understanding the impact of Covid-19 on people with learning disabilities The Research Voices Project Helping to set up the SPIRE learning disabilities data project Analysing information about drug prescribing for people with learning disabilities