Cancer incidence and mortality in adults with learning disabilities

Cancer Research | Last Updated: 05 Mar 26

Background

The health profile of people with learning disabilities differs from the general population. Adults with learning disabilities have greater and different patterns of multimorbidity, beginning earlier in life, with poorer health outcomes including premature mortality. People with learning disabilities die on average 20 years earlier than other people, and often from reasons considered avoidable. We know that people with learning disabilities often do not take part when invited for cancer screening (e.g., breast, cervical and bowel screening rates are low), which may result in delayed diagnosis and treatment, and lead to preventable early death. Cancer profiles and deaths differ in adults with learning disabilities, and it is necessary to gain a better understanding of cancer rates and associated health, demographic, and social factors in Scotland to inform policy and care.

What we did

We linked Scotland’s 2011 Census data to death and cancer registrations to look at incidence and mortality rates in Scotland between 2011 and 2020. We are analysing data on around 18,000 adults (aged 18+) with learning disabilities and comparing this with a 15% unmatched comparison group of other adults from the general population without learning disabilities (or autism).

Analysis will determine the rates of specific cancers (e.g. oesophageal, stomach, colorectal [bowel], breast, cervical, urinary, prostate, lung) and death, exploring differences between the groups.

What we found

The findings, published in the BMJ Open, will contribute towards policy guidance to improve NHS practice around management of adults with learning disabilities in health care settings, as well as advising NHS information campaigns around cancer screening programs specifically for people with learning disabilities.

Read the full article, published in the BMJ Open, below.

You can find a detailed summary of the findings and what these mean for policy and practice below.

An Easy Read summary of the findings is also available below.

Follow up from this research

We are currently investigating differences in cancer treatment and cancer survival between people with, and without, learning disabilities. We are expecting the results to be published in 2027.

Project information last updated: 13th April 2026.

Group member(s) involved in this research

Dr Laura Ward

Laura is an Affiliate Associate Researcher at the Observatory, involved in ongoing work about cancer screening, cancer incidence and cancer-related deaths, as well as pain and prescribing in adults with intellectual disabilities/autism. In 2023, Laura took up the role of Project Manager of the Trusted Research Environment (TRE) at the Health Informatics Centre (HIC) at the University of Dundee. The TRE, or Safe Haven as it is known in Scotland, is responsible for curation and provisioning of NHS Scotland patient data.

Professor Deborah Cairns

Deborah is the Director of the Scottish Learning Disabilities Observatory and Professor of Health and Neurodevelopmental Conditions, in the School of Health and Wellbeing, at the University of Glasgow. Deborah is passionate about her research which aims to improve the health of people with learning disabilities and their families. She has worked on many different projects about people with learning disabilities including: cancer incidence, cancer screening, multi-morbidity (having two or more health conditions), oral health and COVID-19, to name a few. She has also worked on projects about the physical and mental health of family members who support someone with a learning disability. Deborah is committed to conducting research that has impact and works closely with self-advocates with learning disabilities, family carers and third sector organisations who are pivotal in all of her work and who have a shared vision of ensuring the human rights of all people with learning disabilities are recognised, supported and upheld. Read more about Deborah here.

Dr Ewelina Rydzewska-Fazekas

Ewelina is an Affiliate Associate Researcher with the Scottish Learning Disabilities Observatory. Ewelina's work with the Observatory focused around health inequalities and the health needs of people with autism. She is now based at the University of Edinburgh School as a Lecturer in Health Futures at the Edinburgh Futures Institute and School of Health in Social Science.

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Dr Filip Sosenko

Filip joined the Scottish Learning Disabilities Observatory in 2021 as a Research Associate and is currently conducting research into covid-19 outcomes among people with learning disabilities. His previous research focused on severe poverty and associated phenomena, such as the use of food banks, homelessness, and ‘complex needs’. A sociologist by background, Filip has a keen interest in health inequalities. He has advanced statistical skills and expertise in research methodology.

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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

Dr Kirsty Dunn

Kirsty is a Lecturer in Clinical Psychology at the University of Glasgow, and is an affiliate of the Scottish Learning Disabilities Observatory, having joined the team in 2015. She is interested in the health and wellbeing of individuals with learning disabilities and their families. Previously, Kirsty has worked on projects examining patterns of hospital admissions, prevalence of physical and mental health conditions, and the impact of caring for a son/daughter with learning disabilities on fathers. Her current research projects are exploring: The impact of bullying on young people's mental health Common mental health conditions experienced by children and young people Patterns of long-term health conditions and prescribing in adults

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

Dr Maria Truesdale

Maria is a Senior Lecturer in Intellectual Disabilities at the University of Glasgow. Her goal is to improve the physical and mental health and wellbeing of people with intellectual disabilities and their carers through the evaluation, development and testing of complex interventions using gold standard methodology and inclusive research. Maria has conducted a number of trials using complex interventions in physical and mental health for people with intellectual disabilities and has played a central part in the development of a randomised control trial of the clinical and cost-effectiveness of the DESMOND-ID structured education programme for adults with intellectual disability and type 2 diabetes. This multi-site study is the largest funded trial internationally of a health behaviour intervention for people with an intellectual disability. Maria also supports the teaching and delivery of the Post Graduate Positive Behaviour Support programme and contributes to the supervision of University of Glasgow Postgraduate courses, namely MSc in Global Mental Health and MSc in Public Health. She is also the Mental Health and Wellbeing co-lead for Early Career Researchers. Recent and current projects have been funded by NIHR, ESRC (UK Research and Innovation), Baily Thomas Charitable Fund and The Burdett Trust for Nursing.