New study explains how people with Down syndrome can lead longer, healthier lives

A new study published in The Lancet has examined 33 health conditions associated with Down syndrome and the risk of multiple morbidity across the lifespan.

Using this evidence, the authors of the study have suggested specific health guidelines to give people with Down syndrome the best chance of living long and healthy lives.

The research is the largest study of multiple morbidity in Down syndrome and those with other forms of learning disabilities to date in comparison with the general population.

A more targeted approach to annual health screening in primary care

The study, which was carried out by the GO-DS21consortium, used data from the UK Clinical Practise Research Datalink (CPRD) GOLD database to compare the health information of more than 10,000 people with Down syndrome to that of the general population and those with learning disabilities.

The consortium notes the differences in incidence patterns across the lifespan between the groups and say this has important clinical diagnostic and policy implications.

By recognising the relationship between different conditions and their potential indicators, more comprehensive assessment schedules can be implemented to improve diagnosis and management of these conditions, ultimately improving health outcomes for people with Down syndrome.

For example, earlier this year in the House of Commons, SNP MP Chris Stephens spoke about how ‘diagnostic overshadowing’ by healthcare professionals left one of his young constituents, who has Down syndrome, in chronic pain and bleeding for two years, which resulted in ‘irreversible damage’.

If this individual’s condition was identified earlier, it could have been treated more successfully, resulting in an improved health outcome, and possibly, a longer life expectancy.

Stephens says he would now like to see Down syndrome included in the title of the proposed Scottish Learning Disability Bill due to the specific issues faced by the group.

With this in mind, the authors of the paper say a more targeted approach to annual health screening in primary care should be implemented. That way, common conditions affecting people with Down syndrome, such as diabetes, can be spotted early and treated quickly.

They would also like to see the implementation of prevention strategies, such as exercise programmes and nutrition plans, for young people with Down syndrome to address the earlier onset of obesity and cognitive decline, as well as:

• Priority for vaccination (particularly against respiratory pathogens given the immune dysfunction and increase in chronic respiratory disease)
• Regular dental check-ups alongside provision of reasonable adjustments.

England praised for introducing Down Syndrome Act

The authors also note that people with Down syndrome may require access to specialised expertise and support, and praise England for being the first country to implement a law on caring for this group – The Down Syndrome Act (2022).

The Down Syndrome Act requires the Secretary of State to publish guidance for relevant authorities (such as NHS hospitals or local councils) on the steps it would be appropriate for those authorities to take to meet these specific needs when carrying out some of their most important functions. Once the guidance is published these authorities are legally required to take the guidance into account when providing certain core services.

It is hoped that identifying patterns in health issues more prevalent in those with Down syndrome, will help inform this guidance and practice and lead to better outcomes for these individuals.

Peter Brackett, Chair of the NDSPG says: “This research is timely as the guidance for the Down Syndrome Act is currently in development. The National Down Syndrome Policy Group and our members hope that comprehensive guidance fully conversant with the relevant research and experiences will take us closer to a time when specialist health services will help ensure that people with Down syndrome can receive better healthcare and liver, longer healthier lives.”

Lauren Nicolle

Lauren is a qualified journalist who writes primarily across the health and social care sectors. She is passionate about exposing the injustices faced by people with a learning disability, with a particular focus on equal access to healthcare.

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