Ward, Laura McKernan and Cooper, Sally-Ann and Sosenko, Filip and Morrison, David and Fleming, Michael and McCowan, Colin and Robb, Katie and Hanna, Catherine R. and Hughes-McCormack, Laura and Dunn, Kirsty and Conway, David and Henderson, Angela and Smith, Gill and Truesdale, Maria and Cairns, Deborah (2024) Population-based cancer incidence and mortality rates and ratios among adults with intellectual disabilities in Scotland: a retrospective cohort study with record linkage. BMJ Open, 14 (8): e084421. ISSN 2044-6055

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.

People
Ward, Laura McKernan
Author

Ward, Laura McKernan and Cooper, Sally-Ann and Sosenko, Filip and Morrison, David and Fleming, Michael and McCowan, Colin and Robb, Katie and Hanna, Catherine R. and Hughes-McCormack, Laura and Dunn, Kirsty and Conway, David and Henderson, Angela and Smith, Gill and Truesdale, Maria and Cairns, Deborah (2024) Population-based cancer incidence and mortality rates and ratios among adults with intellectual disabilities in Scotland: a retrospective cohort study with record linkage. BMJ Open, 14 (8): e084421. ISSN 2044-6055

See full publications list
Cooper, Sally-Ann
Author

Dagnan, Dave and Thompson, Paul and Hastings, Richard P. and Hatton, Chris and Melville, Craig and Cooper, Sally-Ann and McMeekin, Nicola and Fulton, Lauren and Jones, Rob S.P. and McConnachie, Alex and Jahoda, Andrew (2024) The influence of therapy quality on outcomes from behavioural activation and guided self-help treatments for depression in adults with intellectual disabilities. British Journal of Clinical Psychology, 64 (2). pp. 139-147. ISSN 0144-6657

Ward, Laura McKernan and Cooper, Sally-Ann and Sosenko, Filip and Morrison, David and Fleming, Michael and McCowan, Colin and Robb, Katie and Hanna, Catherine R. and Hughes-McCormack, Laura and Dunn, Kirsty and Conway, David and Henderson, Angela and Smith, Gill and Truesdale, Maria and Cairns, Deborah (2024) Population-based cancer incidence and mortality rates and ratios among adults with intellectual disabilities in Scotland: a retrospective cohort study with record linkage. BMJ Open, 14 (8): e084421. ISSN 2044-6055

See full publications list
Sosenko, Filip
Author

Ward, Laura McKernan and Cooper, Sally-Ann and Sosenko, Filip and Morrison, David and Fleming, Michael and McCowan, Colin and Robb, Katie and Hanna, Catherine R. and Hughes-McCormack, Laura and Dunn, Kirsty and Conway, David and Henderson, Angela and Smith, Gill and Truesdale, Maria and Cairns, Deborah (2024) Population-based cancer incidence and mortality rates and ratios among adults with intellectual disabilities in Scotland: a retrospective cohort study with record linkage. BMJ Open, 14 (8): e084421. ISSN 2044-6055

See full publications list
Morrison, David
Author

Ward, Laura McKernan and Cooper, Sally-Ann and Sosenko, Filip and Morrison, David and Fleming, Michael and McCowan, Colin and Robb, Katie and Hanna, Catherine R. and Hughes-McCormack, Laura and Dunn, Kirsty and Conway, David and Henderson, Angela and Smith, Gill and Truesdale, Maria and Cairns, Deborah (2024) Population-based cancer incidence and mortality rates and ratios among adults with intellectual disabilities in Scotland: a retrospective cohort study with record linkage. BMJ Open, 14 (8): e084421. ISSN 2044-6055

See full publications list
Fleming, Michael
Author

Ward, Laura McKernan and Cooper, Sally-Ann and Sosenko, Filip and Morrison, David and Fleming, Michael and McCowan, Colin and Robb, Katie and Hanna, Catherine R. and Hughes-McCormack, Laura and Dunn, Kirsty and Conway, David and Henderson, Angela and Smith, Gill and Truesdale, Maria and Cairns, Deborah (2024) Population-based cancer incidence and mortality rates and ratios among adults with intellectual disabilities in Scotland: a retrospective cohort study with record linkage. BMJ Open, 14 (8): e084421. ISSN 2044-6055

See full publications list
McCowan, Colin
Author

Ward, Laura McKernan and Cooper, Sally-Ann and Sosenko, Filip and Morrison, David and Fleming, Michael and McCowan, Colin and Robb, Katie and Hanna, Catherine R. and Hughes-McCormack, Laura and Dunn, Kirsty and Conway, David and Henderson, Angela and Smith, Gill and Truesdale, Maria and Cairns, Deborah (2024) Population-based cancer incidence and mortality rates and ratios among adults with intellectual disabilities in Scotland: a retrospective cohort study with record linkage. BMJ Open, 14 (8): e084421. ISSN 2044-6055

See full publications list
Robb, Katie
Author

Christie-de Jong, Floor and Eberhardt, Judith and Ling, Jonathan and Kotzur, Marie and Oyeniyi, Olugbenga Samuel and Nnyanzi, Lawrence and Kabuye, John and Kalemba, Martin and Robb, Kathryn A. (2024) The PROCAN-B Study Protocol: Early diagnosis of PROstate CANcer for Black men - a community-centred participatory approach in Scotland and the North-East of England. PLoS ONE, 19 (12): e0315288. ISSN 1932-6203

Ward, Laura McKernan and Cooper, Sally-Ann and Sosenko, Filip and Morrison, David and Fleming, Michael and McCowan, Colin and Robb, Katie and Hanna, Catherine R. and Hughes-McCormack, Laura and Dunn, Kirsty and Conway, David and Henderson, Angela and Smith, Gill and Truesdale, Maria and Cairns, Deborah (2024) Population-based cancer incidence and mortality rates and ratios among adults with intellectual disabilities in Scotland: a retrospective cohort study with record linkage. BMJ Open, 14 (8): e084421. ISSN 2044-6055

See full publications list
Hanna, Catherine
Author

Ward, Laura McKernan and Cooper, Sally-Ann and Sosenko, Filip and Morrison, David and Fleming, Michael and McCowan, Colin and Robb, Katie and Hanna, Catherine R. and Hughes-McCormack, Laura and Dunn, Kirsty and Conway, David and Henderson, Angela and Smith, Gill and Truesdale, Maria and Cairns, Deborah (2024) Population-based cancer incidence and mortality rates and ratios among adults with intellectual disabilities in Scotland: a retrospective cohort study with record linkage. BMJ Open, 14 (8): e084421. ISSN 2044-6055

Prowse, Sarah R. and Treweek, Shaun and Kiezebrink, Kirsty and Hanna, Catherine (2024) Evidencing the impacts of health research: Insights from trials reported in the 2018 Australian Engagement and Impact Assessment. Health Promotion Journal of Australia, 35 (2). pp. 423-432. ISSN 1036-1073

Lemmon, Elizabeth and Hanna, Catherine and Diernberger, Katharina and Paterson, Hugh M. and Wild, Sarah H. and Ennis, Holly and Hall, Peter S. (2024) Variation in colorectal cancer treatment and outcomes in Scotland: Real world evidence from national linked administrative health data. International Journal of Population Data Science, 9 (1): 2179. ISSN 2399-4908

See full publications list
Hughes-McCormack, Laura
Author

Ward, Laura McKernan and Cooper, Sally-Ann and Sosenko, Filip and Morrison, David and Fleming, Michael and McCowan, Colin and Robb, Katie and Hanna, Catherine R. and Hughes-McCormack, Laura and Dunn, Kirsty and Conway, David and Henderson, Angela and Smith, Gill and Truesdale, Maria and Cairns, Deborah (2024) Population-based cancer incidence and mortality rates and ratios among adults with intellectual disabilities in Scotland: a retrospective cohort study with record linkage. BMJ Open, 14 (8): e084421. ISSN 2044-6055

See full publications list
Dunn, Kirsty
Author

Ward, Laura McKernan and Cooper, Sally-Ann and Sosenko, Filip and Morrison, David and Fleming, Michael and McCowan, Colin and Robb, Katie and Hanna, Catherine R. and Hughes-McCormack, Laura and Dunn, Kirsty and Conway, David and Henderson, Angela and Smith, Gill and Truesdale, Maria and Cairns, Deborah (2024) Population-based cancer incidence and mortality rates and ratios among adults with intellectual disabilities in Scotland: a retrospective cohort study with record linkage. BMJ Open, 14 (8): e084421. ISSN 2044-6055

See full publications list
Conway, D.
Author

Serban, Stefan and Conway, David (2025) Sugar tax impact on oral health and the need to go further upstream. British Dental Journal, 238 (8). pp. 642-643. ISSN 0007-0610

Warner, Frances and Sherriff, Andrea and Culshaw, Shauna and Holliday, Richard and Ryan, Vicky and Conway, David I. (2024) Trends and socioeconomic inequalities in the dental attendance of adult smokers in Scotland from 2009 to 2019, a repeated cross-sectional study. BMC Public Health, 24 (1): 2156. ISSN 1471-2458

Smith, Craig D.L. and McMahon, Alex D. and Purkayastha, Mitana and Creaney, Grant and Clements, Kelten and Inman, Gareth J. and Bhatti, Lesley A. and Douglas, Catriona M. and Paterson, Claire and Conway, David I. (2024) Head and neck cancer incidence is rising but the sociodemographic profile is unchanging: a population epidemiological study (2001-2020). BJC Reports, 2: 71. ISSN 2731-9377

See full publications list
Henderson, Angela
Author

Ward, Laura McKernan and Cooper, Sally-Ann and Sosenko, Filip and Morrison, David and Fleming, Michael and McCowan, Colin and Robb, Katie and Hanna, Catherine R. and Hughes-McCormack, Laura and Dunn, Kirsty and Conway, David and Henderson, Angela and Smith, Gill and Truesdale, Maria and Cairns, Deborah (2024) Population-based cancer incidence and mortality rates and ratios among adults with intellectual disabilities in Scotland: a retrospective cohort study with record linkage. BMJ Open, 14 (8): e084421. ISSN 2044-6055

See full publications list
Smith, Gill
Author

Ward, Laura McKernan and Cooper, Sally-Ann and Sosenko, Filip and Morrison, David and Fleming, Michael and McCowan, Colin and Robb, Katie and Hanna, Catherine R. and Hughes-McCormack, Laura and Dunn, Kirsty and Conway, David and Henderson, Angela and Smith, Gill and Truesdale, Maria and Cairns, Deborah (2024) Population-based cancer incidence and mortality rates and ratios among adults with intellectual disabilities in Scotland: a retrospective cohort study with record linkage. BMJ Open, 14 (8): e084421. ISSN 2044-6055

See full publications list
Truesdale, Maria
Author

Ward, Laura McKernan and Cooper, Sally-Ann and Sosenko, Filip and Morrison, David and Fleming, Michael and McCowan, Colin and Robb, Katie and Hanna, Catherine R. and Hughes-McCormack, Laura and Dunn, Kirsty and Conway, David and Henderson, Angela and Smith, Gill and Truesdale, Maria and Cairns, Deborah (2024) Population-based cancer incidence and mortality rates and ratios among adults with intellectual disabilities in Scotland: a retrospective cohort study with record linkage. BMJ Open, 14 (8): e084421. ISSN 2044-6055

See full publications list
Cairns, Deborah
Author

Ward, Laura McKernan and Cooper, Sally-Ann and Sosenko, Filip and Morrison, David and Fleming, Michael and McCowan, Colin and Robb, Katie and Hanna, Catherine R. and Hughes-McCormack, Laura and Dunn, Kirsty and Conway, David and Henderson, Angela and Smith, Gill and Truesdale, Maria and Cairns, Deborah (2024) Population-based cancer incidence and mortality rates and ratios among adults with intellectual disabilities in Scotland: a retrospective cohort study with record linkage. BMJ Open, 14 (8): e084421. ISSN 2044-6055

See full publications list
Texts
181:186
lightbox image
333570.pdf - Published Version
Available under License Creative Commons Attribution.

Download (826kB) | Preview
181:187
lightbox image
+ supplementary
333570 suppl.pdf - Published Version
Available under License Creative Commons Attribution.

Download (997kB) | Preview
Information
Library

View Item