Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2022 Mar 24;12(3):e056974.
doi: 10.1136/bmjopen-2021-056974.

Cancer in deceased adults with intellectual disabilities: English population-based study using linked data from three sources

Pauline Heslop  1 , Adam Cook  2 , Brian Sullivan  3 , Rachel Calkin  4 , Johanna Pollard  4 , Victoria Byrne  4
Affiliations

Cancer in deceased adults with intellectual disabilities: English population-based study using linked data from three sources

Pauline Heslop et al. BMJ Open. .

Abstract

Objective: To improve our understanding of cancer in adults with intellectual disabilities.

Design: Population-based study using linked data about deceased adults from the Learning (Intellectual) Disabilities Mortality Review (LeDeR) programme, the national cancer registry and NHS Digital.

Setting: England.

Participants: 1096 adults with intellectual disabilities identified by the LeDeR programme who died between 1 January 2017 and 31 December 2019.

Outcome measure: Any form of cancer listed as a long-term health condition by a LeDeR reviewer or 10th edition of the International Classification of Diseases codes C00-D49 included on Parts I or II of the Medical Certificate of Cause of Death.

Results: In decedents with intellectual disabilities and cancer, more than a third (35%; n=162) had cancer diagnosed via emergency presentations. Almost half (45%; n=228) of cancers were at stage IV when diagnosed. More than a third (36%; n=309) of underlying causes of deaths were of cancers of the digestive system; almost half of these (48%; n=147) were cancer of the colon, rectum or anus. Of those who died with colorectal cancer, 43% were below the age threshold for colorectal screening.

Conclusions: In decedents with intellectual disabilities, symptoms suggestive of cancer had tended to be identified most frequently as an emergency and at a late stage. There is a need for greater awareness of symptoms of cancer in this population, a lower threshold for referral by General Practitioners (GPs), accelerated access to diagnosis and treatment and consideration paid to lowering the age for colorectal screening.

Keywords: adult oncology; health policy; primary care.

PubMed Disclaimer

Conflict of interest statement

Competing interests: None declared.

References

    1. Satgé D, Axmon A, Trétarre B, et al. . Cancer diagnoses among older people with intellectual disability compared with the general population: a national register study. J Intellect Disabil Res 2020;64:579–88. 10.1111/jir.12734 - DOI - PubMed
    1. Landes SD, Stevens JD, Turk MA. Cause of death in adults with intellectual disability in the United States. J Intellect Disabil Res 2021;65:47–59. 10.1111/jir.12790 - DOI - PMC - PubMed
    1. Cooper S-A, Allan L, Greenlaw N, et al. . Rates, causes, place and predictors of mortality in adults with intellectual disabilities with and without Down syndrome: cohort study with record linkage. BMJ Open 2020;10:e036465. 10.1136/bmjopen-2019-036465 - DOI - PMC - PubMed
    1. Hosking FJ, Carey IM, Shah SM, et al. . Mortality among adults with intellectual disability in England: comparisons with the general population. Am J Public Health 2016;106:1483–90. 10.2105/AJPH.2016.303240 - DOI - PMC - PubMed
    1. Heslop P, Blair PS, Fleming P, et al. . The Confidential inquiry into premature deaths of people with intellectual disabilities in the UK: a population-based study. Lancet 2014;383:889-95. 10.1016/S0140-6736(13)62026-7 - DOI - PubMed

Publication types