Cancer prevention and screening for people with intellectual disabilities in Europe: a systematic review and recommendations for policy and practice

Abstract

Introduction People with intellectual disability experience inequalities across the cancer care continuum, including lower screening participation, later-stage diagnosis, and higher cancer related mortality. Whether European cancer prevention and screening policies explicitly address this population has not been systematically mapped. Methods This review aimed to identify and synthesise European national and international policy frameworks, guidelines, and recommendations for cancer prevention and screening that address this population. A systematic search of policy, recommendation and guideline documents across academic databases, grey literature portals, and organisational sources, to August 2025 was under taken. The Population, Concept, Context (PCC) framework guided eligibility. Two reviewers per country screened, extracted, and appraised documents indepen dently using the Authority, Accuracy, Coverage, Objectivity, Date, Significance (AACODS) checklist. Synthesis was narrative, stratified by cancer site and cancer control focus. Results Sixteen documents met the inclusion criteria, originating from five jurisdictions: the United Kingdom, the Netherlands, Belgium, Denmark, and the European Union more broadly. Fifteen of the sixteen addressed cancer screen ing, one also addressed prevention, and two addressed clinical monitoring. Adjustments for people with intellectual disability were concentrated on breast, cervical, and bowel screening and grouped into accessible information, appoint ment adaptations, carer involvement, consent and capacity support, and work force training. Most documents originated from higher expenditure healthcare systems, and no eligible documents were retrieved from the majority of European Union member states. Discussion Policy guidance for cancer prevention and screening for people with intellectual disability is unevenly distributed across Europe and con centrated in a small group of countries. Existing guidance should be extended beyond screening to encompass prevention, treatment, and survivorship, and EU coordination may help address this gap.