Cancer screening in people with intellectual disability: a scoping review of participation, barriers, facilitators, and improvement strategies within the EUCanScreen initiative

Abstract

People with intellectual disability (ID) experience significant health inequities, yet evidence on their participation in cancer screening and access to preventive care remains fragmented. Conducted within the EUCanScreen Joint Action, this scoping review synthesised global evidence to characterise the current landscape of cancer screening for people with ID and identify approaches to support more inclusive screening practices. Following Joanna Briggs Institute methodology and PRISMA-ScR guidelines, we systematically searched MEDLINE, Embase, and Web of Science (2013–2024) for qualitative, quantitative, and mixed-methods studies, supplemented by grey literature. Eligible studies examined participation, barriers, facilitators, or interventions related to six cancers prioritised in European screening policy: breast, cervical, colorectal, prostate, gastric, and lung. Perspectives of people with ID, caregivers, and health care professionals were included. Data were charted and synthesised descriptively, including pathway-based mapping of barriers and facilitators, narrative and visual summaries of screening uptake, and narrative synthesis of intervention studies. Of 4,387 records screened, 78 met the inclusion criteria. Most studies addressed breast cancer screening (n = 53), cervical screening (n = 44), and colorectal cancer screening (n = 25), which benefit from long-standing organised screening programmes in many countries. In contrast, evidence on prostate cancer screening (n = 3) and gastric cancer screening (n = 1) was sparse, and no studies examined lung cancer screening, reflecting the far more limited implementation of organised screening for these cancers during the study period. Across contexts, people with ID consistently showed lower participation than the general population. Barriers included fear, inaccessible information, and insufficient provider training, while facilitators involved trusted accompaniment, accessible communication, and tailored examination settings. Intervention studies were scarce but suggested potential for educational, organisational, and tailored support strategies to improve accessibility, preparedness, and participation. Persistent, multi-level barriers hinder equitable cancer screening for people with ID. Tailored, person-centred screening pathways, improved provider education, and enhanced data systems are needed. Coordinated national and EU-level initiatives, such as EUCanScreen, are vital for structural improvements. Future research should prioritise multicomponent intervention development, pathway-level accessibility, and the inclusion of underrepresented groups to strengthen equity in cancer prevention.