Cancer prevention and screening for people with intellectual disabilities in Europe: a systematic review and recommendations for policy and practice
Journal
Frontiers in Public Health
Date Issued
2026-08-20
Author(s)
Vukovic, Vladimir
Knapp, Peter
Sykes, Kate
Denny, Margaret
Kowalczyk, Oliwia
Denieffe, Suzanne
Wells, John
Cuypers, Maarten
Tyner, Barrie
Lima, Kálya Yasmine
Popa, Adela Elena
Ibrahim, Dalia Ismail
Hansford, Rebecca
Allerslev Horsbøl, Trine
Milutinović, Dragana
Güvenç Tuna, Bilge
Şahin, Eda Başustaoğlu
Ilgaz, Ayşegül
Banda, Amina
Sarac, Elif
Doğan, Soner
Akbulut, Seda Cansu Yeniğün
Aksoy, Bahar
Tadić, Dušanka
Merzah, Mohammed A.
Soylar, Pınar
Doğan, Aysenur
Simin, Dragana
Mušanović, Jasmin
Altin, Damla
Topkaya, Merve Sena
Kassymbekova, Fatima
Tar Bolacali, Edanur
Lynch, Louise
Burke, Eilish
McMahon, Martin
DOI
10.3389/fpubh.2026.1925665
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.
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.
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