Bettering cancer screening for people with intellectual disabilities

Professor Deborah Cairns, University of Glasgow
RSE International Joint Projects Awardee

L-R: Professor Katie Robb and Professor Deborah Cairns. Photo: Ian Georgeson Photography

Cancer screening programmes can reduce deaths; however, they fail to sufficiently engage people with intellectual disabilities, leading to low uptake.

The health profile of people with intellectual disabilities differs from the general population. Adults with intellectual disabilities have significantly more complex patterns of patterns of multimorbidity, beginning earlier in life. They have poorer health outcomes, including premature mortality (Cooper 2015, Kinnear 2018, McCarron 2013, White 2022), dying 20 years earlier than other people (O’Leary 2018). Reasons for premature deaths in people with intellectual disabilities include poor uptake of cancer screening, delays/problems with diagnosis/treatment, problems with identifying needs, and difficulty in providing appropriate care in response to changing needs (Cuypers 2021).

The challenge is that screening programmes fail to sufficiently engage the most vulnerable populations, leading to persistent inequalities in uptake (Cuypers 2024). Furthermore, a national Scottish study reported that colorectal and breast cancer were among the most likely diagnosed cancers in adults with intellectual disabilities; and they were more likely to die from these cancers compared to the general population. The study also found that adults with intellectual disabilities were diagnosed at more advanced stages and were more likely to die from metastatic cancer of unknown primary origin compared to the general population (Ward 2024).

Professor Deborah Cairns, Director of the Scottish Learning Disabilities Observatory at the University of Glasgow, was awarded an RSE International Joint Projects award to collaborate with colleagues at the University of New South Wales in Australia to address this important but under-researched area.

Both institutions in Scotland and Australia are conducting complementary work, including:

  • Defining a collective agenda to improve access and uptake.
  • Describing the organisation of cancer screening in both countries for people with intellectual disabilities.
  • Collating, sharing, and comparing its research findings.

They aim to deliver a shared vision of improving access to cancer screening for people with intellectual disabilities, which they will use to leverage further grant funding to expand their research.

Professor Deborah Cairns, University of Glasgow | Photo: Ian Georgeson Photography

Cancer research among people with intellectual disabilities is neglected and underfunded, and we need diversity in our approach as a research community. I am working with Professor Katie Robb, Lead for the Cancer Behaviour Research Group, here at the University of Glasgow and it is our mission to improve access to cancer screening both nationally and internationally, ultimately reducing mortality rates of cancer in people with intellectual disabilities. We will share our evidence widely with stakeholders, including policymakers, practitioners, carers, people with intellectual disabilities, and specialists on an international scale, and we will challenge systems and attitudes that stand in the way of change. We will deliver impact by securing a commitment to action from key stakeholders to ensure people with intellectual disabilities have equal access to screening services.”
Professor Cairns

The award has enabled the researchers in Scotland to share best practices with some of the leading international experts in cancer screening and intellectual disabilities. Professor Cairns said,

We have shared key research findings in each country, discussed different methodological approaches to investigate cancer incidence, screening and mortality, and deliberated current and future programmes of work that will benefit both countries. We visited Australia, where we presented to members from the University of New South Wales, the University of Sydney, the University of Melbourne, cancer charities, and health technology analysts. This network all had an interest in our cancer screening work in Scotland and the desire and drive to deliver real change to the current health inequalities faced by people with intellectual disabilities.”

Looking to the future, Professor Cairns, Professor Robb, and colleagues at the University of New South Wales hope to submit a grant application for the project: Accessible Breast Screening for people with intellectual disability: the role of navigators (Lead: University of New South Wales) alongside another to develop the project: Are mammograms ‘fit for purpose’ for people with intellectual disabilities with varying levels of disability or needs (Lead: University of Glasgow). They also plan to lead three symposia at the World Congress of the International Association for the Scientific Study of Intellectual and Developmental Disabilities, along with academics from Ireland and the Netherlands.

Professor Cairns’ ultimate goal is to increase cancer screening uptake nationally and internationally and reduce mortality rates in this vulnerable population.

To read more about this project, please visit: Cancer incidence and mortality in adults with learning disabilities | Our research | Scottish Learning Disabilities Observatory (sldo.ac.uk)

References

Cooper, S-A. et al. (2015). Multiple physical and mental health comorbidity in adults with intellectual disabilities: population-based cross-sectional analysis. BMC Family Practice, 16(1), 110. https://doi.org/10.1186/s12875-015-0329-3

Cuypers, M. et al. (2021). Cancer‐related mortality among people with intellectual disabilities: A nationwide population‐based cohort study. Cancer. https://doi.org/10.1002/cncr.34030

Cuypers M, Cairns D, Robb KA (2024). Identifying the deficits in cancer care for people with intellectual disabilities BMJ Oncology 2024; 3: e000171. doi: 10.1136/bmjonc-2023-000171 https://bmjoncology.bmj.com/content/bmjonc/3/1/e000171.full.pdf

Kinnear, D. et al. (2018). Prevalence of physical conditions and multimorbidity in a cohort of adults with intellectual disabilities with and without Down syndrome: Cross-sectional study. BMJ Open, 8(2). https://doi.org/10.1136/bmjopen-2017-018292

McCarron et al. (2013). Patterns of multimorbidity in an older population of persons with an intellectual disability: Results from the intellectual disability supplement to the Irish longitudinal study on ageing (IDS-TILDA). RDD, 34(1), 521–527. https://doi.org/10.1016/j.ridd.2012.07.029

O’Leary, L. et al. (2018). Early death and causes of death of people with intellectual disabilities: A systematic review. JARID, 31(3), 325–342. https://doi.org/10.1111/jar.12417

Ward L.A. et al. (2024). Population-based cancer incidence and mortality rates and ratios among adults with intellectual disabilities in Scotland. MedRxiv 2024.01.18.23300433; doi: https://doi.org/10.1101/2024.01.18.23300433

White, A. et al. (2022). Learning from lives and deaths – people with a learning disability and autistic people. https://www.england.nhs.uk/wp-content/uploads/2021/03/B0428-LeDeR-policy-2021.pdf

For more information on RSE International Joint Projects

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