Multiple morbidity across the lifespan in people with Down Syndrome
Multiple morbidity across the lifespan in people with Down Syndrome or intellectual disability: Population-based cohort study using electronic health records
R. Asaad Baksh, Sarah E. Pape, Li F. Chan, Aisha A. Aslam, Martin C. Gulliford, GO-DS21 Consortium & André Strydom
The Down Syndrome Act (2022)
In April 2022 the Down Syndrome Act was introduced in England. This new law means that the Government must now provide information to the NHS and local councils of how to provide the most appropriate care and support for people with Down syndrome.
The Down Syndrome Act was a major achievement for the community because people with Down syndrome may experience discrimination when trying to access healthcare services in the NHS and they have poorer health than people in the general population. A study from 2018 found that people with Down syndrome die 28 years younger than the general population. A lot of these deaths are from avoidable causes that can be reduced with better healthcare and therefore reducing them is very achievable.
Health conditions in Down Syndrome and current gaps in research
We know that people with Down syndrome can experience a wide range of health conditions throughout their life like epilepsy, dementia, obesity and many more. But most research has been with children with Down syndrome rather than adults with Down syndrome. There is no good research looking at the health of people with Down syndrome from birth to old age. It is important to take a lifespan (from birth to old age) look at health conditions in people with Down syndrome to make sure they have access to the correct monitoring, support and treatment for poor health at the right ages. On top of this, Down syndrome is one form of intellectual disability but there are many more causes of intellectual disability and people with different intellectual disabilities might develop different health conditions.
Knowing what health conditions people get at different ages and if the health of people with Down syndrome is different to other types of intellectual disabilities are very important for the new Down Syndrome Act to be effective at improving healthcare in Down syndrome. At present most health screening guidelines are based on information from general population studies. These guidelines and the treatments offered do not consider that health conditions might be different in people with Down syndrome compared to other groups of people.
Our study aims
Our study which has been published in the Lancet Public Health will help to provide better information of how health conditions might be different between people with Down syndrome and the general population and people with Down syndrome and people with other kinds of intellectual disabilities. We used information from GP practices across the UK and looked at how common 32 health conditions are across the lifespan. We used anonymised GP information from over 10,000 people with Down syndrome and compared this to people from the general population and people with intellectual disability without Down syndrome.
Our main findings
Our findings confirmed that people with Down syndrome have much higher rates of dementia, epilepsy, problems with their thyroid and obstructive sleep apnoea compared to the general population. These conditions were also more common in people with Down syndrome compared to the people with different intellectual disabilities. We established the ages at which people with Down syndrome typically developed these conditions. In addition, we showed that kidney disease is more common in people with Down syndrome compared to the general population and also more common in Down syndrome compared to people with different intellectual disabilities.
We looked at how conditions could be grouped together based on how common they were at different ages. In childhood, people with Down syndrome have higher rates of obstructive sleep apnoea, blood cancers (e.g. leukaemia) and inflammatory bowel disease (e.g. Crohn's disease) and these conditions become less common as people get older. We also found that some conditions including seizures, sleep disorders (e.g. insomnia), and strokes occur around the same time as dementia onset which could help with understanding dementia better in people with Down syndrome.
On the other hand, people with Down syndrome are less likely to have high cholesterol, high blood pressure, solid cancers, or mental health disorders compared to both the general population and people with different intellectual disabilities. We found no difference between the groups in rates of liver disease. People with Down syndrome and people with different intellectual disabilities do not differ in their rates of obesity, but it is more common in both than the general population.
Other new findings included showing that people with Down syndrome who have one health condition are more likely to have certain other conditions. For example if you are obese, you are more likely to have obstructive sleep apnoea, but also dementia and thyroid problems. Similarly, people with Down syndrome who had one cardiovascular disease (such as high blood pressure) were more likely to also have another such as ischaemic heart disease or stroke. This has major implications for disease prevention and management. By effectively reducing risk for one condition we may be able to reduce the risk of another developing. Conversely, inadequate health care may increase the risk of developing additional conditions with significant impacts on lifespan, quality of life and well-being for people with Down syndrome.
Recommendations based on our results
Our research highlights that people with Down syndrome experience a wide range of health conditions throughout their life. But we have shown that the risks are not static and change with age and the risks are different to those observed in the general population. The risks may stack up, with several health conditions arising alongside each other.
It is therefore vital that:
1. People with Down syndrome are proactively offered health monitoring, diagnosis and treatment throughout their life with treatments adjusted to meet the needs of the individual.
2. Specialist services with expertise in recognising and managing multi-morbidity are available to ensure appropriate, holistic support is available to optimise healthcare for people with Down syndrome. This is because Down syndrome can affect nearly all bodily systems, with connections between conditions.
3. Health surveillance is tailored specifically for people with Down syndrome and not based on general population guidance. This is especially important for conditions associated with ageing (such as cataracts) which can occur at a significantly younger age in people with Down syndrome but may not be routinely screened for in younger people.
4. Cardiovascular health is as important in people with Down syndrome as in the general population and may be related to dementia. Health promotion strategies such as exercise, weight management, and healthy eating must be inclusive and appropriate for people with Down syndrome and be offered alongside other medical interventions.
5. Further research is undertaken to better understand health patterns in people with Down syndrome and ensure optimal preventative and treatment strategies are implemented.
This is one of the first studies to look at the health of people with Down syndrome across the lifespan. We have shown that different conditions occur at different times and that people with Down syndrome experience different health conditions compared to the general population. We have also shown that the health needs of people with Down syndrome may be different from people with other types of intellectual disabilities. Together, these findings will be important for the Down Syndrome Act as policies are being developed to try to improve the health of people with Down syndrome so that they can live healthier and longer lives. The full study can be found at https://doi.org/10.1016/S2468-2667(23)00057-9
About the authors
Dr R. Asaad Baksh is a currently a Postdoctoral Researcher in the Forensics and Neurodevelopmental Sciences (FANS) Department, Institute of Psychiatry, Psychology & Neuroscience, King’s College London.
Dr Sarah E. Pape has recently finished her PhD in the FANS Department, Institute of Psychiatry, Psychology & Neuroscience, King’s College London and is about to finish her clinical training.
Professor André Strydom is a specialist in the Psychiatry of Intellectual disabilities and Professor in Intellectual Disabilities in the FANS Department, Institute of Psychiatry, Psychology & Neuroscience, King’s College London.
