LeDeR provides a unique national lens that no single trust or region can offer. Its scale allows us, for the first time, to examine avoidable deaths among adults with severe or profound intellectual disabilities through a population-based analysis and explore this in greater detail.
Dr Michael Kwan Leung Yu, First author of the study and Post-Doctoral Research Associate at King’s IoPPN
18 August 2026
People with severe intellectual disability are dying 24 years younger than the general population
A new study has found that adults with severe or profound intellectual disability are dying at a median age of 57.9, 24 years younger than the general population. The study, published in PLOS Medicine, builds on the national Learning from Lives and Deaths (LeDeR) mortality review programme.
Researchers compared 1,301 adults with severe or profound intellectual disability who died in England between 2021 and 2023 with 2,626 adults with a mild or moderate intellectual disability, and 536,311 adults from the general population who died in 2022. Data came from the LeDeR programme and the Office for National Statistics.
The study found adults with severe or profound intellectual disability died at a median age of 57.9, compared with 65.0 for those with a mild or moderate intellectual disability and 81.9 for the general population. Furthermore, two in five of these deaths were avoidable, accounting for more than 15,000 years of life lost, over 40 per cent of the total. Pneumonia and epilepsy were the leading avoidable causes, notably higher than in the other two groups, followed by cerebrovascular disease.
The study also found that, within this group, adults from ethnic minority backgrounds died around 14 years younger than their White counterparts. Researchers describe this as an association rather than a proven cause, and flag possible under-representation in the data, but say it points to intersecting inequalities that warrant urgent investigation.
The researchers say the findings point to a need for targeted interventions, including annual health checks, vaccination programmes, and timely management of conditions such as pneumonia and epilepsy, reaching adults with severe or profound intellectual disability consistently, with particular attention to those from ethnic minority backgrounds.
Pneumonia and epilepsy are largely treatable, so seeing them as leading causes of avoidable death in this group points to a gap between the care people could receive and the care they are getting. Closing that gap means making sure basic interventions, health checks, vaccination, timely treatment, reliably reach adults with severe or profound intellectual disability.
Dr Rory Sheehan, Co-first author of the study and Senior Clinical Lecturer at King’s IoPPN
The research team included colleagues from Oxleas NHS Foundation Trust, the London School of Hygiene & Tropical Medicine, Kingston University London, the University of Lancashire, and South London and Maudsley NHS Foundation Trust.
This adds to a growing body of evidence, including from LeDeR's own annual reports, that adults with severe or profound intellectual disability face substantially poorer health outcomes than the wider population. A gap of this size is not inevitable. It reflects how consistently our health and care systems are, or are not, reaching people with the most complex needs.
Professor André Strydom, Corresponding author and Professor in Intellectual Disabilities
“Avoidable mortality, clinical outcomes and determinants of premature death among adults with severe or profound intellectual disability: A population-based analysis of mortality data in England.” by Yu, M.K.L., Sheehan, R., Magill, N. et al. was published in PLOS Medicine (2026).
R.S, I.T.W, U.C and A.S are principal investigators under a contract with NHS England, Tender for Strategic Partnership, Learning Disability and Autism Programme (Contract reference: 4592), to produce the annual LeDeR mortality reports. The role of the funder involved data collection, including the data used in this study. NHS England had no other role in the design of this study, the statistical analysis, the interpretation of the findings, the decision to publish, or the preparation of the manuscript.
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Post-Doctoral Research Associate
Senior Clinical Lecturer
Professor in Intellectual Disabilities