The benefits and harms of cancer screening programmes for adults with intellectual disabilities: A systematic review

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The available evidence points towards lower screening participation in cancer screening programmes among people with intellectual disabilities, but the balance of benefits and harms of screening is unknown. The aim of this systematic review is to examine the health outcomes (mortality, morbidity) and harms of cancer screening programmes for adults with intellectual disabilities. Materials and methods The review is registered on the Open Science Framework Registries: https://osf.io/8vmkb . A systematic search of published peer-reviewed and grey literature was conducted from inception up to 28 th February 2025. MEDLINE, EMBASE, Web of Science, PsycINFO, and relevant organisational websites were searched. Additionally, experts in the field were consulted about evidence on the health outcomes and harms of national cancer screening programmes for adults with intellectual disabilities. Two reviewers independently screened titles and abstracts and assessed full texts against the eligibility criteria. Results A total of 3,104 records were identified, and 232 full-text articles were assessed for eligibility. No study met the inclusion criteria. Conclusions There is a critical lack of evidence regarding the benefits and harms of cancer screening programmes for people with intellectual disabilities. There are numerous studies relating to coverage, uptake, and factors influencing participation in cancer screening programmes. Participation should not be assumed to equate to better outcomes, and there is a real risk of ‘equity-washing’ if this is used as a basis for practice. There is, therefore, an urgent need to examine the full screening pathway continuum for people with intellectual disabilities, along with the associated outcomes, benefits, and harms. Introduction Cancer is a major societal, public health, and economic problem, ranking as a leading cause of death worldwide ( 1 ). Cancer screening programmes, which detect pre-cancerous or early-stage cancer in asymptomatic individuals are an important public health initiative that increases the chance of survival ( 2 ). However, screening is also associated with harms ( 3 ) such as discomfort and future health risks (e.g. radiation exposure)( 4 ) from tests, inaccurate results that cause false reassurance (false negative test results)( 5 ) or anxiety( 6 , 7 ) (false positive test results)( 8 ), and overdiagnosis( 9 – 11 ) (the detection of disease that would not have caused symptoms during a person’s lifetime) which leads to unnecessary overtreatment. While these are not always avoidable, in an effective screening programme the benefits will outweigh the harms. Most cancer screening programmes focus on detecting cancers of the bowel, female breast, and cervix, and these cancers contribute substantially to the overall cancer burden ( 12 ). Internationally, there is significant variability in how screening programmes are delivered, with non-uniformed approaches likely to mask differences, making like-for-like comparisons difficult. Western European countries typically experience the highest rates of uptake and coverage of cancer screening programmes,( 13 ) with socioeconomic status and social vulnerability factors ( 14 ) being known to negatively influence uptake and outcomes ( 15 ). Cancer screening uptake and coverage in people with intellectual disabilities have been reported as being lower than that of the general population ( 16 – 19 ). Increased social vulnerability factors, health inequalities, and inequities regarding access and accessibility are frequently cited as issues that impact healthcare utilisation ( 20 , 21 ). However, it is not fully clear how these factors impact the uptake of national cancer screening programmes in their entirety, though the mechanisms are likely similar ( 22 ). Despite dying younger, mortality ages for people with intellectual disabilities are increasing, meaning they are more likely to be exposed to the largest risk factor for developing cancers—aging ( 23 , 24 ).Emerging evidence from Canada ( 25 , 26 ), Scotland ( 27 ), and England ( 28 ) highlights that some cancers for which screening programmes exist appear to be occurring at a younger age in people with intellectual disabilities population. Moreover, when these cancers are detected they are often identified at later stages than the general population ( 26 ). This limits the chance of having curative treatment. That such inequities exist provides a concerning picture regarding the detection of cancers where population-level interventions exist but do not meet the needs of people with intellectual disabilities. Screening programmes recognise the need for a more inclusive approach towards screening, with the Irish national screening service developing an equity framework in 2023 ( 29 ) and Public Health England developing their screening inequalities strategy in 2020 ( 30 ) to better understand and improve equity in cancer screening. Nevertheless, barriers to screening continue to exist for people with intellectual disabilities ( 20 ). In parallel with the general literature, it is likely that these barriers follow a health equity gradient influenced by broader general socioeconomic and environmental conditions where people from more marginalised and hard-to-reach groups are more likely to be influenced by the negative factors that also influence the determinants of health and well-being ( 31 – 33 ). Due to the existing challenges and complex health needs of people with intellectual disabilities, it is important to understand participation in national cancer screening programmes. No attempt has yet been made to synthesise the existing published evidence exploring the relative harms and benefits of cancer screening for people with intellectual disabilities. Consequently, this review aims to evaluate the health outcomes (e.g. mortality, morbidity) of participation in national cancer screening programmes for people with intellectual disabilities. In doing so, this systematic review aims to provide evidence to help understand the benefits and limitations for this population by identifying gaps and areas for improvement and future practice. Research questions What are the health outcomes (e.g. mortality, morbidity) of cancer screening programmes for adults who have intellectual disabilities? What are the harms of cancer screening programmes for adults who have intellectual disabilities? Materials and methods The review is registered on the Open Science Framework Registries: https://osf.io/8vmkb Identification and selection of studies Search strategy We undertook a comprehensive search strategy comprising: (1) searches of electronic bibliographic databases; (2) searches of websites of intellectual disabilities charities and cancer charities; (3) contacting known experts in the field and through discussions during an international workshop in May 2025; and (4) scrutiny of references of included studies and relevant systematic reviews. The electronic bibliographic databases search strategy was developed in MEDLINE (Ovid) using terms relating to (1) intellectual disability, (2) cancer, and (3) screening, and was adapted for EMBASE (Ovid), Web of Science (Clarivate), and PsycInfo (Ovid). Copies of the full search strategies are provided in Supplementary file 1. Searches were conducted on the 28 th February 2025. To identify additional/unpublished research, we searched the websites of a sample of charitable organisations that support either (1) people who have intellectual disabilities, or (2) people who have bowel, breast, or cervical cancer and provide research grants. The organisations were either known to the review team or identified through a Google search (“national [breast/bowel/cervical] cancer charities grant funding research”), with relevant returns from the first two search results pages being searched. A list of the organisations searched is provided in Supplementary file 2. Each organisation’s website was searched by entering the term “screening” (intellectual disability charities) or “disability” (cancer charities) into the website’s search box. Searches were conducted from the 7 th to the 13 th March 2025. Study eligibility criteria Studies reporting quantitative data, that were published in the English language, and investigated the health benefits (e.g., mortality, morbidity) and harms of population or targeted bowel, breast, and cervical cancer screening programmes for adults who have intellectual disabilities were eligible for inclusion in this review. We excluded studies of children and young people (aged 17 and under), people who did not have an intellectual disability, and where more than 10% of the study sample did not meet our inclusion criteria. Studies where the method of cancer detection was opportunistic screening, case-finding, one-off testing outside of an organised screening programme or routine examinations were also excluded, as were studies that provided insufficient information for assessment of methodological quality/risk of bias to be conducted, or no numerical outcome data. Documents not available in the English language, studies where it could not be determined if the inclusion criteria were met, and literature reviews were also not eligible for inclusion in this review. Review strategy Study selection was conducted through the Covidence platform ( 34 ) for the electronic databases, and directly through the websites of cancer and intellectual disabilities organisations. For both electronic database and website searches, two reviewers independently assessed titles and abstracts. Any paper considered potentially relevant by either reviewer was retained for full text assessment. Full text assessment was conducted independently by two reviewers against the review eligibility criteria, with any disagreements resolved by consensus or through discussion with a third reviewer. Results Searching, sifting, and sorting Full details of the flow of studies through the review are reported in Figure 1 . We identified 2,262 unique records through database searches and 842 documents through the websites of cancer and intellectual disabilities organisations. After examination of titles and abstracts, 232 documents were retained for full text assessment (electronic databases: n = 231; websites: n = 1). None met the inclusion criteria for this review. Appendix 3 lists the studies that were excluded at the full text assessment stage of this review. Download figure Open in new tab Figure 1. PRISMA flow diagram Discussion In this systematic review, we intended to examine the health outcomes (e.g. mortality, morbidity) and harms of screening for breast, bowel, and cervical cancers for people with intellectual disabilities. Despite extensive searches of peer-reviewed and grey literature, we did not identify any studies that met the review eligibility criteria. The published evidence in this field broadly relates to the uptake and determinants of cancer screening programmes ( 16 – 20 ). While this is an important consideration, it does not address the overarching aims and objectives of screening, which are to improve morbidity and mortality through the early detection of disease ( 2 ). A significant evidence gap exists regarding health outcomes from cancer screening programmes for people with intellectual disabilities, including its relative benefits and harms. Therefore, recommendations from existing research that advocate for increased uptake and coverage need to be fully considered in terms of their overall health benefits for this population. Cancer screening programmes offer substantial benefits, particularly with respect to mortality reduction from cervical( 35 ) and colorectal screening ( 36 ), which may provide a greater net benefit than breast screening ( 37 ). For people with intellectual disabilities, the screening process needs to be understood as a continuum, not merely as a single event focused on coverage and uptake. While there is growing evidence in this population around invitation and attendance, greater emphasis must also be placed on exploring health outcomes, test performance, diagnostic follow-up, treatment initiation, positive outcomes, and harms, which are the fundamental to screening ( 2 ). Solely focusing on coverage and uptake risks ‘equity-washing’, whereby numerical participation is improved without knowing whether the programmes actually enhance health outcomes for people with intellectual disabilities. This lack of evidence is particularly concerning given the atypical health presentations in this population, including different baselines for life expectancy and increased multimorbidity ( 24 , 38 – 40 ). People with intellectual disabilities face unique risks related to the capacity to consent, physiological differences, and the invasiveness and validity of some tests ( 41 , 42 ). For example, in the Netherlands, Banda and colleagues( 19 ) reported higher rates of invalid and inconclusive test results in the breast cancer, cervical cancer, and colon cancer screening programmes among people with intellectual disabilities compared with the general population. Although not reported in the study, these findings may point towards potential harms of screening, particularly increased psychological and physical burden, but further research is needed. Additionally, the experience of screening and its psychological impacts should not be overlooked for this population, who often experience difficulties with self-reporting and health literacy ( 43 , 44 ). A recent systematic review of general asymptomatic populations reported that while most people view screening positively, those who receive false-positive results often experience increased levels of anxiety ( 7 ). A separate study on mammography found that women were less likely to return for future screenings following false-positive results, particularly when short-interval follow-up or biopsy was recommended, raising concerns about ongoing engagement in routine screening ( 45 ). Colorectal screening may offer clear benefits for people with intellectual disabilities, given the high prevalence of these cancers in this population ( 27 , 46 ). However, when positive results from screening tests (e.g., Faecal Immunochemical Test) or presenting symptoms necessitate further investigation, colonoscopy is typically required and often involves heavy sedation and/or general anaesthesia. Such procedures introduces increased risks for people with intellectual disabilities and require appropriate adjustments ( 47 ). These harm–benefit trade-offs must be appropriately assessed and considered but, as the lack of results in our systematic review demonstrate, there is no current evidence to support people with intellectual disabilities to make decisions about whether to participate in cancer screening programmes. An recent example of the importance of understanding harm–benefit trade-offs come from a modelling study simulating the benefits and harms of annual, biennial, triennial, and one-time digital mammography screening in women with Down syndrome( 48 ). In this study, screening was assessed to be less favourable for women with Down syndrome compared to average-risk women without Down syndrome, due to their lower baseline risk of breast cancer and reduced life expectancy. While the study was based on a hypothetical cohort, it does highlight that standard screening guidelines developed for average-risk populations may be deficient, or even inappropriate, for people with Down syndrome. In this context, similar patterns of inequity and have been observed in other underserved groups highlighting the need to understand health outcomes and understanding the benefits and harm of cancer screening programmes. Cancer screening participation rates are reported to be significantly lower among African American, Asian American, Latinx American, and American Indian/Alaska Native populations ( 49 ) as well as among transgender and gender-nonconforming adults ( 50 ), LGBTQ+ populations ( 51 ), and individuals with severe mental illness. ( 52 ) While much of the evidence also focuses on coverage and uptake, there is growing documentation of downstream harms, such as poorer cancer outcomes among African Americans ( 53 ), and people with mental illness ( 54 ). Similar inequalities and inequities in cancer risk and outcomes are now being observed in the intellectual disability population ( 28 ). For example, Heslop et al. (2022) found that 43% of adults diagnosed with colorectal cancer in England were aged 18–59 years, suggesting that the age threshold for colorectal screening (over 60 years) in people with intellectual disabilities may be inequitable. An example of screening policy being altered to meet the needs of population subgroups comes from the UK cervical screening programme where self-sampling was recently recommended as an alternative to clinician-sampling for under-screened women ( 55 ). This example illustrates how recommendations evolve to reflect population-specific risk profiles. As a priority, we argue for an evaluation of the entire screening pathway for people with intellectual disabilities to determine where processes succeed and where they fall short for this population. This should include assessments of health outcomes, economic efficiency, and benefit–harm balance. Without this evidence, there is a risk that efforts to improve uptake may be interpreted as improvements in outcomes, when they may, in fact, lead to unintended harm. We therefore assert that, collectively, we must explore and understand what happens after people with intellectual disabilities participate in screening, particularly in terms of the balance of benefits and harms. Only then can we consider reasonable adjustments to enhance health outcomes for people with intellectual disabilities when accessing cancer screening. Strengths and limitations To our knowledge, this is the first systematic review to examine the benefits and harms of cancer screening programmes for people who have intellectual disabilities. We followed standard methodology for conducting systematic reviews, and the protocol is publicly available on the Open Science Framework ( https://osf.io/8vmkb ). We searched a broad range of sources for evidence (electronic databases, grey literature in the form of relevant organisation websites, contact with experts), without imposing limits on study design beyond a necessity for studies to present some relevant quantitative data. Our review has several limitations. First, we did not involve people with intellectual disabilities in this review. This has implications for the applicability of the review as while mortality, morbidity, and harms are essential outcomes of screening programmes they are not necessarily the only outcomes of interest for people with intellectual disabilities themselves. Second, we took a pragmatic approach to determining which websites to search for relevant research. While this is likely to capture the websites of the largest organisations relating to cancer and intellectual disabilities, the results returned are determined by the algorithm used for that search engine; different organisation websites might have been identified by other search engines. There are also numerous other sources of grey literature that we did not explore (e.g., doctoral theses). Finally, we did not search for studies in languages other than English. It is possible that relevant studies in languages other than English could have been missed. Future Research This review highlights a significant gap in the evidence relating to health outcomes from cancer screening programmes for people with intellectual disabilities. Existing research has largely focused on coverage and uptake, but not on the benefits and harms associated with cancer screening for this population. From this perspective, research should view screening programmes as a continuum and, using longitudinal data, map the full trajectory from invitation to participation, diagnosis, and outcomes for people with intellectual disabilities. This would provide a greater understanding of the health outcomes of screening for this population. Additionally, it be important to estimate the benefit–harm ratio and cost-effectiveness of screening strategies for this population, accounting for different scenarios in terms of this population’s life expectancy and associated comorbidities. It is also important to consider the lived experiences of people with intellectual disabilities, as well as their families and supporters, in relation to participating in cancer screening programmes. This is particularly important to help understand the and psychological impacts of cancer screening programmes. Overall, it is critically important that future research addresses the potential for ‘equity-washing’, where increases in coverage and uptake are misrepresented as improved outcomes, without consideration of the actual benefit–harm balance. Conclusion In summary, this systematic review highlights a substantial evidence gap concerning the benefits and harms of cancer screening programmes for adults with intellectual disabilities. We found no studies that had evaluated whether cancer screening improves outcomes or causes harm in people with intellectual disabilities. Without this evidence and knowledge of downstream effects, the balance of benefits and harms of cancer screening in people with intellectual disabilities is unknown. ancer screening must be assessed as a continuum of care, not solely through measures of uptake and coverage. Data Availability All relevant data are within the manuscript and its Supporting Information files. Supporting information Author contributions CRediT authorship contribution statement Martin McMahon: Conceptualisation, methodology, validation, investigation, writing - original draft, writing - review and editing, project administration Samantha Flynn: Conceptualisation, methodology, validation, investigation, writing - review and editing Samantha A Johnson: Methodology, investigation, writing - review and editing, Chris Stinton: Conceptualisation, methodology, validation, investigation, writing - original draft, writing - review and editing, supervision Acknowledgement The views expressed in this publication are those of the authors and do not necessarily reflect those of our host institutions or any funders. Appendix 1. Database searches View this table: View inline View popup Appendix 2. Organisations included in the website search (websites and results) View this table: View inline View popup Appendix 3. Studies excluded at full text assessment View this table: View inline View popup References 1. ↵ Bray F , Laversanne M , Sung H , Ferlay J , Siegel RL , Soerjomataram I , et al. Global cancer statistics 2022: GLOBOCAN estimates of incidence and mortality worldwide for 36 cancers in 185 countries . CA Cancer J Clin . 2024 ; 74 ( 3 ): 229 – 63 . OpenUrl CrossRef PubMed 2. ↵ World Health Organization . A short guide to cancer screening: increase effectiveness, maximize benefits and minimize harm . A short guide to cancer screening: increase effectiveness, maximize benefits and minimize harm 2022 . 3. ↵ Croswell JM , Ransohoff DF , Kramer BS , editors. Principles of cancer screening: lessons from history and study design issues . Seminars in oncology ; 2010 : Elsevier . 4. ↵ Warren L , Dance D , Young K . Radiation risk with digital mammography in breast screening . GOV UK . 2017 . 5. ↵ Silverwood SM , Backer G , Galloway A , Reid K , Jeter A , Harrison M . Assessing the rates of false-positive ovarian cancer screenings and surgical interventions associated with screening tools: a systematic review . BMJ oncology . 2024 ; 3 ( 1 ): e000404 . OpenUrl Abstract / FREE Full Text 6. ↵ Lin W , Huang W , Mei C , Zhong C , Zhu L , Liu P , et al. Pre-procedural anxiety and associated factors among women seeking for cervical cancer screening services in Shenzhen, China: does past screening experience matter? Frontiers in Oncology . 2022 ; 12 : 857138 . OpenUrl PubMed 7. ↵ Kim A , Chung KC , Keir C , Patrick DL . Patient-reported outcomes associated with cancer screening: a systematic review . BMC cancer . 2022 ; 22 ( 1 ): 223 . OpenUrl PubMed 8. ↵ Gram EG , Siersma V , Brodersen JB . Long-term psychosocial consequences of false-positive screening mammography: a cohort study with follow-up of 12–14 years in Denmark . BMJ open . 2023 ; 13 ( 4 ): e072188 . OpenUrl Abstract / FREE Full Text 9. ↵ Marmot MG , Altman D , Cameron D , Dewar J , Thompson S , Wilcox M . The benefits and harms of breast cancer screening: an independent review . British journal of cancer . 2013 ; 108 ( 11 ): 2205 – 40 . OpenUrl CrossRef PubMed Web of Science 10. Brodersen J , Schwartz LM , Heneghan C , O’Sullivan JW , Aronson JK , Woloshin S . Overdiagnosis: what it is and what it isn’t . Royal Society of Medicine ; 2018 . p. 1 – 3 . 11. ↵ Flemban AF . Overdiagnosis due to screening mammography for breast cancer among women aged 40 years and over: a systematic review and meta-analysis . Journal of Personalized Medicine . 2023 ; 13 ( 3 ): 523 . OpenUrl PubMed 12. ↵ Ferlay J , Colombet M , Soerjomataram I , Dyba T , Randi G , Bettio M , et al. Cancer incidence and mortality patterns in Europe: Estimates for 40 countries and 25 major cancers in 2018 . European journal of cancer . 2018 ; 103 : 356 – 87 . OpenUrl PubMed 13. ↵ Organisation for Economic Co-operation and Development . Cancer screening . 2023 . 14. ↵ Bauer C , Zhang K , Xiao Q , Lu J , Hong Y-R , Suk R . County-level social vulnerability and breast, cervical, and colorectal cancer screening rates in the US, 2018 . JAMA network open . 2022 ; 5 ( 9 ): e2233429-e . OpenUrl 15. ↵ Bozhar H , McKee M , Spadea T , Veerus P , Heinävaara S , Anttila A , et al. Socio-economic inequality of utilization of cancer testing in Europe: A cross-sectional study . Preventive Medicine Reports . 2022 ; 26 : 101733 . OpenUrl PubMed 16. ↵ Steele CB , Townsend JS , Courtney-Long EA , Young M . Prevalence of cancer screening among adults with disabilities, United States, 2013 . Preventing chronic disease . 2017 ; 14 : E09 . OpenUrl 17. Horsbøl TA , Michelsen SI , Lassen TH , Juel K , Bigaard J , Hoei-Hansen CE , et al. Breast cancer screening among women with intellectual disability in Denmark . JAMA network open . 2023 ; 6 ( 1 ): e2248980-e . OpenUrl 18. Cobigo V , Ouellette-Kuntz H , Balogh R , Leung F , Lin E , Lunsky Y . Are cervical and breast cancer screening programmes equitable? The case of women with intellectual and developmental disabilities . Journal of Intellectual Disability Research . 2013 ; 57 ( 5 ): 478 – 88 . OpenUrl CrossRef PubMed 19. ↵ Banda A , Cuypers M , Naaldenberg J , Timen A , Leusink G . Cancer screening participation and outcomes among people with an intellectual disability in the Netherlands: a cross-sectional population-based study . The Lancet Public Health . 2025 ; 10 ( 3 ): e237 – e45 . OpenUrl 20. ↵ Chan DN , Law BM , Au DW , So WK , Fan N . A systematic review of the barriers and facilitators influencing the cancer screening behaviour among people with intellectual disabilities . Cancer Epidemiology . 2022 ; 76 : 102084 . OpenUrl PubMed 21. ↵ Ouellette-Kuntz H , Coo H , Cobigo V , Wilton AS . Uptake of colorectal cancer screening among Ontarians with intellectual and developmental disabilities . PloS one . 2015 ; 10 ( 2 ): e0118023 . OpenUrl PubMed 22. ↵ McMahon M , McCallion P , McCarron M . An invisible population: Late-stage cancer diagnosis for people with intellectual or developmental disability . Cancer (0008543X) . 2024 ; 130 ( 5 ). 23. ↵ McCarron M , Carroll R , Kelly C , McCallion P . Mortality rates in the general Irish population compared to those with an intellectual disability from 2003 to 2012 . Journal of Applied Research in Intellectual Disabilities . 2015 ; 28 ( 5 ): 406 – 13 . OpenUrl PubMed 24. ↵ Glover G , Williams R , Heslop P , Oyinlola J , Grey J . Mortality in people with intellectual disabilities in England . Journal of Intellectual Disability Research . 2017 ; 61 ( 1 ): 62 – 74 . OpenUrl CrossRef PubMed 25. ↵ Hansford R , Ouellette-Kuntz H , Bourque MA , Decker K , Derksen S , Hallet J , et al. Investigating inequalities in cancer staging and survival for adults with intellectual or developmental disabilities and cancer: A population-based study in Manitoba, Canada . Cancer Epidemiology . 2024 ; 88 : 102500 . OpenUrl PubMed 26. ↵ Mahar AL , Biggs K , Hansford RL , Derksen S , Griffiths R , Enns JE , et al. Stage IV breast, colorectal, and lung cancer at diagnosis in adults living with intellectual or developmental disabilities: A population-based cross-sectional study . Cancer . 2024 ; 130 ( 5 ): 740 – 9 . OpenUrl PubMed 27. ↵ Ward LM , Cooper S-A , Sosenko F , Morrison D , Fleming M , McCowan C , et al. 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 . 2024 ; 14 ( 8 ): e084421 . OpenUrl Abstract / FREE Full Text 28. ↵ Heslop P , Cook A , Sullivan B , Calkin R , Pollard J , Byrne V . Cancer in deceased adults with intellectual disabilities: English population-based study using linked data from three sources . BMJ open . 2022 ; 12 ( 3 ): e056974 . OpenUrl PubMed 29. ↵ National Screening Service . Improving equity in screening: A strategic framework 2023 - 2027 . 2023 . 30. ↵ Public Health England. Guidance: PHE Screening inequalities strategy Office for Health Improvement and Disparities ; 2020 . 31. ↵ Marmot M . The health gap: the challenge of an unequal world . The Lancet . 2015 ; 386 ( 10011 ): 2442 – 4 . OpenUrl 32. Chapman HM , McMahon M , Kaley A , Mafuba K , Donovan M-A . The Case for More Action and More Research into Health Care Provision and Health Inequalities for People with Intellectual Disabilities . 2024 . 33. ↵ McMahon M , Hatton C , Hardy C , Preston NJ . The relationship between subjective socioeconomic status and health in adults with and without intellectual disability . Journal of Applied Research in Intellectual Disabilities . 2022 ; 35 ( 6 ): 1390 – 402 . OpenUrl PubMed 34. ↵ Veritas Health Innovation . Covidence systematic review software. Melbourne, Australia 2025 . 35. ↵ Singh D , Vignat J , Lorenzoni V , Eslahi M , Ginsburg O , Lauby-Secretan B , et al. Global estimates of incidence and mortality of cervical cancer in 2020: a baseline analysis of the WHO Global Cervical Cancer Elimination Initiative . The lancet global health . 2023 ; 11 ( 2 ): e197 – e206 . OpenUrl 36. ↵ Zauber AG . The impact of screening on colorectal cancer mortality and incidence: has it really made a difference? Digestive diseases and sciences . 2015 ; 60 : 681 – 91 . OpenUrl CrossRef PubMed 37. ↵ Gøtzsche PC , Jørgensen KJ . Screening for breast cancer with mammography . Cochrane database of systematic reviews . 2013 ( 6 ). 38. ↵ Cooper S-A , McLean G , Guthrie B , McConnachie A , Mercer S , Sullivan F , et al. Multiple physical and mental health comorbidity in adults with intellectual disabilities: population-based cross-sectional analysis . BMC family practice . 2015 ; 16 : 1 – 11 . OpenUrl PubMed 39. Liao P , Vajdic C , Trollor J , Reppermund S . Prevalence and incidence of physical health conditions in people with intellectual disability–a systematic review . PloS one . 2021 ; 16 ( 8 ): e0256294 . OpenUrl CrossRef PubMed 40. ↵ McMahon M , Hatton C . A comparison of the prevalence of health problems among adults with and without intellectual disability: A total administrative population study . Journal of Applied Research in Intellectual Disabilities . 2021 ; 34 ( 1 ): 316 – 25 . OpenUrl PubMed 41. ↵ Dunn M , Strnadová I , Scully JL , Hansen J , Loblinzk J , Sarfaraz S , et al. Equitable and accessible informed healthcare consent process for people with intellectual disability: a systematic literature review . BMJ Quality & Safety . 2024 ; 33 ( 5 ): 328 – 39 . OpenUrl Abstract / FREE Full Text 42. ↵ Wark S , MacPhail C , McKay K , Müller A . Informed consent in a vulnerable population group: supporting individuals aging with intellectual disability to participate in developing their own health and support programs . Australian Health Review . 2016 ; 41 ( 4 ): 436 – 42 . OpenUrl 43. ↵ Chinn D . Review of interventions to enhance the health communication of people with intellectual disabilities: A communicative health literacy perspective . Journal of Applied Research in Intellectual Disabilities . 2017 ; 30 ( 2 ): 345 – 59 . OpenUrl PubMed 44. ↵ Geukes C , Bruland D , Latteck Ä-D . Health literacy in people with intellectual disabilities: A mixed-method literature review . Kontakt . 2018 ; 20 ( 4 ): e416 – e23 . OpenUrl 45. ↵ Miglioretti DL , Abraham L , Sprague BL , Lee CI , Bissell MC , Ho T-QH , et al. Association between false-positive results and return to screening mammography in the Breast Cancer Surveillance Consortium cohort . Annals of Internal Medicine . 2024 ; 177 ( 10 ): 1297 – 307 . OpenUrl PubMed 46. ↵ Willis D , Samalin E , Satgé D . Colorectal cancer in people with intellectual disabilities . Oncology . 2018 ; 95 ( 6 ): 323 – 36 . OpenUrl PubMed 47. ↵ Chaudhary K , Bagharwal P , Wadhawan S . Anesthesia for intellectually disabled . Journal of Anaesthesiology Clinical Pharmacology . 2017 ; 33 ( 4 ): 432 – 40 . OpenUrl PubMed 48. ↵ Alagoz O , Hajjar A , Chootipongchaivat S , van Ravesteyn NT , Yeh JM , Ergun MA , et al. Benefits and harms of mammography screening for women with Down syndrome: A collaborative modeling study . Journal of general internal medicine . 2019 ; 34 : 2374 – 81 . OpenUrl PubMed 49. ↵ Liu D , Schuchard H , Burston B , Yamashita T , Albert S . Interventions to reduce healthcare disparities in cancer screening among minority adults: a systematic review . Journal of Racial and Ethnic Health Disparities . 2021 ; 8 : 107 – 26 . OpenUrl 50. ↵ Tabaac AR , Sutter ME , Wall CS , Baker KE . Gender identity disparities in cancer screening behaviors . American journal of preventive medicine . 2018 ; 54 ( 3 ): 385 – 93 . OpenUrl CrossRef PubMed 51. ↵ Heer E , Peters C , Knight R , Yang L , Heitman SJ . Participation, barriers, and facilitators of cancer screening among LGBTQ+ populations: a review of the literature . Preventive Medicine . 2023 ; 170 : 107478 . OpenUrl CrossRef PubMed 52. ↵ Kerrison RS , Jones A , Peng J , Price G , Verne J , Barley EA , et al. Inequalities in cancer screening participation between adults with and without severe mental illness: results from a cross-sectional analysis of primary care data on English Screening Programmes . British Journal of Cancer . 2023 ; 129 ( 1 ): 81 – 93 . OpenUrl PubMed 53. ↵ Giaquinto AN , Miller KD , Tossas KY , Winn RA , Jemal A , Siegel RL . Cancer statistics for African American/black people 2022 . CA: a cancer journal for clinicians . 2022 ; 72 ( 3 ): 202 – 29 . OpenUrl CrossRef PubMed 54. ↵ Kisely S , Forsyth S , Lawrence D . Why do psychiatric patients have higher cancer mortality rates when cancer incidence is the same or lower? Australian & New Zealand Journal of Psychiatry . 2016 ; 50 ( 3 ): 254 – 63 . OpenUrl PubMed 55. ↵ Martinelli C . UK NSC recommends HPV self-sampling option for under-screened women in cervical screening programme 2025 [Available from: https://nationalscreening.blog.gov.uk/2025/06/24/uk-nsc-recommends-hpv-self-sampling-option-for-under-screened-women-in-cervical-screening-programme/ . View the discussion thread. Back to top Previous Next Posted August 03, 2025. Download PDF Data/Code Email Thank you for your interest in spreading the word about medRxiv. NOTE: Your email address is requested solely to identify you as the sender of this article. Your Email * Your Name * Send To * Enter multiple addresses on separate lines or separate them with commas. 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Share The benefits and harms of cancer screening programmes for adults with intellectual disabilities: A systematic review Martin McMahon , Samantha Flynn , Samantha A Johnson , Chris Stinton medRxiv 2025.08.01.25332659; doi: https://doi.org/10.1101/2025.08.01.25332659 Share This Article: Copy Citation Tools The benefits and harms of cancer screening programmes for adults with intellectual disabilities: A systematic review Martin McMahon , Samantha Flynn , Samantha A Johnson , Chris Stinton medRxiv 2025.08.01.25332659; doi: https://doi.org/10.1101/2025.08.01.25332659 Citation Manager Formats BibTeX Bookends EasyBib EndNote (tagged) EndNote 8 (xml) Medlars Mendeley Papers RefWorks Tagged Ref Manager RIS Zotero Tweet Widget Facebook Like Google Plus One Subject Area Public and Global Health Subject Areas All Articles Addiction Medicine (568) Allergy and Immunology (863) Anesthesia (297) Cardiovascular Medicine (4421) Dentistry and Oral Medicine (443) Dermatology (381) Emergency Medicine (606) Endocrinology (including Diabetes Mellitus and Metabolic Disease) (1507) Epidemiology (15212) Forensic Medicine (30) Gastroenterology (1121) Genetic and Genomic Medicine (6581) Geriatric Medicine (667) Health Economics (996) Health Informatics (4520) Health Policy (1366) Health Systems and Quality Improvement (1611) Hematology (539) HIV/AIDS (1264) Infectious Diseases (except HIV/AIDS) (15906) Intensive Care and Critical Care Medicine (1103) Medical Education (620) Medical Ethics (144) Nephrology (667) Neurology (6580) Nursing (345) Nutrition (998) Obstetrics and Gynecology (1141) Occupational and Environmental Health (956) Oncology (3324) Ophthalmology (970) Orthopedics (369) Otolaryngology (420) Pain Medicine (435) Palliative Medicine (129) Pathology (663) Pediatrics (1689) Pharmacology and Therapeutics (691) Primary Care Research (710) Psychiatry and Clinical Psychology (5431) Public and Global Health (9212) Radiology and Imaging (2193) Rehabilitation Medicine and Physical Therapy (1368) Respiratory Medicine (1194) Rheumatology (593) Sexual and Reproductive Health (709) Sports Medicine (529) Surgery (709) Toxicology (99) Transplantation (288) Urology (265) (function(){function c(){var b=a.contentDocument||a.contentWindow.document;if(b){var d=b.createElement('script');d.innerHTML="window.__CF$cv$params={r:'9ff1773fd88009d6',t:'MTc3OTM0NDMyNw=='};var a=document.createElement('script');a.src='/cdn-cgi/challenge-platform/scripts/jsd/main.js';document.getElementsByTagName('head')[0].appendChild(a);";b.getElementsByTagName('head')[0].appendChild(d)}}if(document.body){var a=document.createElement('iframe');a.height=1;a.width=1;a.style.position='absolute';a.style.top=0;a.style.left=0;a.style.border='none';a.style.visibility='hidden';document.body.appendChild(a);if('loading'!==document.readyState)c();else if(window.addEventListener)document.addEventListener('DOMContentLoaded',c);else{var e=document.onreadystatechange||function(){};document.onreadystatechange=function(b){e(b);'loading'!==document.readyState&&(document.onreadystatechange=e,c())}}}})();