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

Vladimir Vukovic, Peter Knapp, Kate Sykes, Margaret Denny, Oliwia Kowalczyk, Suzanne Denieffe, John Wells, Maarten Cuypers, Barrie Tyner, Kálya Yasmine Lima, Adela Elena Popa, Dalia Ismail Ibrahim, Rebecca Hansford, Trine Allerslev Horsbøl, Dragana Milutinović, Bilge Güvenç Tuna, Eda Başustaoğlu Şahin, Ayşegül Ilgaz, Amina Banda, Elif Sarac, Soner Doğan, Seda Cansu Yeniğün Akbulut, Bahar Aksoy, Dušanka Tadić, Mohammed A Merzah, Pınar Soylar, Aysenur Doğan, Dragana Simin, Jasmin Mušanović, Damla Altin, Merve Sena Topkaya, Fatima Kassymbekova, Vladimir Trajkovski, Edanur Tar Bolacali, Louise Lynch, Eilish Burke, Martin McMahon

Journal: Frontiers in public health 2026;14():1925665

PMID: 42694833

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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.

Copyright © 2026 Vukovic, Knapp, Sykes, Denny, Kowalczyk, Denieffe, Wells, Cuypers, Tyner, Lima, Popa, Ibrahim, Hansford, Allerslev Horsbøl, Milutinović, Güvenç Tuna, Şahin, Ilgaz, Banda, Sarac, Doğan, Akbulut, Aksoy, Tadić, Merzah, Soylar, Doğan, Simin, Mušanović, Altin, Topkaya, Kassymbekova, Trajkovski, Tar Bolacali, Lynch, Burke and McMahon.

Address: Faculty of Medicine, University of Novi Sad, Novi Sad, Serbia.; Institute of Public Health of Vojvodina, Novi Sad, Serbia.; Department of Health Sciences and Hull York Medical School, University of York, York, United Kingdom.; School of Communities and Education, Faculty of Health and Wellbeing, Northumbria University, Newcastle upon Tyne, United Kingdom.; Faculty of Health Sciences, University of Maribor, Maribor, Slovenia.; Faculty of Health Sciences, Department of Oncology, Collegium Medicum Nicolaus Copernicus University, Toruń, Poland.; Institute of Advanced Studies, Nicolaus Copernicus University, Toruń, Poland.; Faculty of Arts and Humanities, South East Technological University, Waterford, Ireland.; South East Technological University, Waterford, Ireland.; Department of Primary and Community Care, Radboud University Medical Center, and Academic Collaborative Intellectual Disability and Health 'Sterker op Eigen Benen', Nijmegen, Netherlands.; Trinity Centre for Ageing and the Life Course in Intellectual Disability, School of Nursing and Midwifery, Trinity College Dublin, Dublin, Ireland.; Department of Social Work, Journalism, Public Relations and Sociology, Faculty of Social Sciences and Humanities, Lucian Blaga University of Sibiu, Sibiu, Romania.; Ministry of Health and Population, Cairo, Egypt.; School of Nursing, Queen's University, Kingston, ON, Canada.; Division of Cancer Care and Epidemiology, Sinclair Cancer Research Institute, Queen's University, Kingston, ON, Canada.; National Institute of Public Health, University of Southern Denmark, Copenhagen, Denmark.; Department of Nursing, Faculty of Medicine, University of Novi Sad, Novi Sad, Serbia.; Department of Biophysics, Faculty of Medicine, Yeditepe University, Istanbul, Türkiye.; Faculty of Health Sciences, Nursing Department, Giresun University, Giresun, Türkiye.; Department of Public Health Nursing, Faculty of Nursing, Akdeniz University, Antalya, Türkiye.; Ministry of Defense, Special Care Center for the Elderly, Ankara, Türkiye.; Department of Medical Biology, School of Medicine, Yeditepe University, Istanbul, Türkiye.; Kumluca Faculty of Health Sciences, Department of Surgical Disease Nursing, Akdeniz University, Antalya, Türkiye.; Kumluca Faculty of Health Sciences, Department of Child Health and Disease Nursing, Akdeniz University, Antalya, Türkiye.; Department of Nursing, College of Health Sciences, Academy of Applied Studies Belgrade, Belgrade, Serbia.; Department of Public Health and Epidemiology, Faculty of General Medicine, University of Debrecen, Debrecen, Hungary.; Department of Community Health Techniques, College of Polytechnic, Al-Furat Al-Awsat Technical University, Kufa, Iraq.; Department of Nursing, Faculty of Health Sciences, Fırat University, Elazığ, Türkiye.; Department of Medical Biology and Human Genetics, Faculty of Medicine, University of Sarajevo, Sarajevo, Bosnia and Herzegovina.; Department of Special Education, Faculty of Education, Sakarya University, Sakarya, Türkiye.; Department of Nutrition and Dietetics, Gülhane Health Sciences Institute, University of Health Sciences Türkiye, Ankara, Türkiye.; Asfendiyarov Kazakh National Medical University, Almaty, Kazakhstan.; Faculty of Philosophy, Institute of Special Education and Rehabilitation, Ss. Cyril and Methodius University, Skopje, North Macedonia.; Faculty of Health Sciences, Department of Child Health and Disease Nursing, Kırşehir Ahi Evran University, Kırşehir, Türkiye.

DOI: 10.3389/fpubh.2026.1925665

MeSH Terms: Humans, Europe, Intellectual Disability, Neoplasms, Early Detection of Cancer, Health Policy