Population-based cancer incidence and mortality rates and ratios among adults with intellectual disabilities in Scotland: a retrospective cohort study with record linkage

L. A. Ward*, S-A Cooper, F. Sosenko, D. Morrison, M. Fleming, Colin McCowan, K. Robb, C. R. Hanna, L. Hughes-McCormack, K. Dunn, D. Conway, A. Henderson, G. Smith, M. Truesdale, D. Cairns

*Corresponding author for this work

Research output: Contribution to journalArticlepeer-review

Abstract

Objective  To provide contemporary data on cancer mortality rates within the context of incidence in the population with intellectual disabilities.

Methods  Scotland’s 2011 Census was used to identify adults with intellectual disabilities and controls with records linked to the Scottish Cancer Registry and death certificate data (March 2011–December 2019). The control cohort without intellectual disabilities and/or autism were used for indirect standardisation and calculation of crude incident rates/crude mortality rates, and age–sex standardised incident rate ratios/standardised mortality ratios (SIR/SMR), with 95% CIs.

Results  Adults with intellectual disabilities were most likely diagnosed cancers of digestive, specifically colorectal (14.2%), lung (9.3%), breast (female 22.9%), body of the uterus (female 9.3%) and male genital organs (male 17.6%). Higher incident cancers included metastatic cancer of unknown primary origin (female SIR=1.70, male SIR=2.08), body of uterus (female SIR=1.63), ovarian (female SIR=1.59), kidney (female SIR=1.85) and testicular (male SIR=2.49). SMRs were higher, regardless of a higher, similar or lower incidence (female SMR=1.34, male SMR=1.07). Excess mortality risk was found for colorectal (total SMR=1.54, male SMR=1.59), kidney (total SMR=2.01 u, female SMR=2.85 u), female genital organs (SMR=2.34 (ovarian SMR=2.86 u, body of uterus SMR=2.11), breast (female SMR=1.58) and metastatic cancer of unknown primary origin (female SMR=2.50 u, male SMR=2.84).

Conclusions  Adults with intellectual disabilities were more likely to die of cancer than the general population. Reasons for this may include later presentation/diagnosis (so poorer outcomes), poorer treatment/compliance or both. Accessible public health approaches are important for people with intellectual disabilities, and healthcare professionals need to be aware of the different cancer experiences faced by this population.
Original languageEnglish
Article numbere084421
Number of pages11
JournalBMJ Open
Volume14
Issue number8
DOIs
Publication statusPublished - 14 Aug 2024

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