Ward, L.A. et al. (2024) Population-based cancer incidence and mortality rates and ratios among adults with intellectual disabilities in Scotland. medRxiv, (doi: 10.1101/2024.01.18.23300433) (Unpublished)
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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 (CIR/CMR), and age-sex Standardized Incident Rate Ratios/ Standardized Mortality Ratios (SIR/SMR), with 95% Confidence Intervals (CI). 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 (male SMR=1.59), kidney (female SMR=2.85u), female genital organs (ovarian SMR=2.86u, body of uterus SMR=2.11), breast (female SMR=1.58), and metastatic cancer of unknown primary origin (female SMR=2.50u, 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.
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