47% of deaths among adults with Down syndrome in England were from causes classed as avoidable, with epilepsy and pneumonia as the leading treatable causes, and COVID-19 the leading preventable cause, according to a new study led by researchers at the Institute of Psychiatry, Psychology & Neuroscience (IoPPN) at King's College London.
Nearly half of deaths among adults with Down syndrome in England are from causes that could potentially have been prevented or treated, according to a new study led by researchers at the Institute of Psychiatry, Psychology & Neuroscience (IoPPN) at King's College London.
Published in JAMA Network Open, the study analysed the deaths of 3,381 adults with Down syndrome and 15,347 other adults with a learning disability, recorded between 2016 and 2023 by the LeDeR programme (Learning from Lives and Deaths - people with a learning disability and autistic people (LeDeR)). The researchers compared them with Office for National Statistics data on more than four million deaths in the general population.
The researchers classed 47% of deaths among adults with Down syndrome as avoidable, meaning they happened before the age of 75 and could have been prevented through public health measures or treated with timely healthcare. Among other adults with a learning disability, the figure was 45%. Most avoidable deaths among adults with Down syndrome were from treatable causes, which accounted for 29% of all deaths in the group, with epilepsy (8.6%) and pneumonia (6.0%) the most common. Deaths related to epilepsy were more frequent than in either comparison group. COVID-19 was the leading preventable cause, accounting for 9.9% of deaths.
We have shown that individuals with Down syndrome have high rates of avoidable deaths due to treatable conditions such as lung infections. This is concerning and requires action, including vaccination programmes for common infections such as flu, COVID-19 and pneumococcal bacteria. People with Down syndrome would also benefit from monitoring for the complications of Alzheimer's disease, which was a common cause of death.
André Strydom, Professor of Intellectual Disabilities at the Institute of Psychiatry, Psychology & Neuroscience (IoPPN) at King's College London
Adults with Down syndrome died at a median age of 59.5 years, compared with 63.8 for other adults with a learning disability and 81.9 for the general population. After accounting for other factors, having Down syndrome was associated with higher odds of an avoidable death than among other adults with a learning disability, and with dying younger from an avoidable cause.
Within the Down syndrome group, people from ethnic minority backgrounds had higher odds of an avoidable death, and those living in more deprived areas died from avoidable causes at a younger age. Asthma, diabetes and osteoporosis were also linked to higher odds of avoidable death.
The way a death is recorded determines whether it can be recognised as avoidable. Death certificates frequently list Down syndrome as the underlying cause, which obscures the condition that led to the death. By taking the next condition listed instead, we were able to classify these deaths according to their actual cause, rather than as an inevitable consequence of the syndrome. Without that step, a substantial avoidable burden remains undetected.
Lili Bokor, first author of the study and Research Assistant at the Institute of Psychiatry, Psychology & Neuroscience (IoPPN) at King's College London
Dr Rory Sheehan, at the Institute of Psychiatry, Psychology & Neuroscience, said: "This study shows that people with Down syndrome may have different patterns of morbidity and mortality compared to other people with a learning disability. Data collected through LeDeR have helped us to understand these differences which should enable professionals and health services to adapt their approaches, identify issues earlier, and provide more targeted intervention and treatment."
Dr Michael Yu, co-first author of the study and Post-Doctoral Research Associate at the Institute of Psychiatry, Psychology & Neuroscience, said: "The larger number of cases, together with the detailed medical records and death certificate data available through LeDeR, enabled us to identify distinct patterns of avoidable death among adults with Down syndrome and other adults with a learning disability. This further demonstrates the unique value of LeDeR as national program for epidemiological research."
Understanding of the health conditions associated with having Down syndrome has increased in recent times, but we are all too keenly aware that too many people who have Down syndrome sadly die prematurely or from an avoidable cause. The findings from this study provide crucial learning points, such as the management of respiratory health and epilepsy, and the importance of baseline assessments of cognitive functioning and monitoring for the onset of dementia. These should lead directly into action at an Integrated Care Board level to ensure future avoidable deaths can be stopped and health outcomes for people who have Down syndrome are optimised.
Julian Hallett, Services Development Manager at the Down's Syndrome Association
