Cancer prevention and screening for people with intellectual disabilities in Europe: a systematic review and recommendations for policy and practice.
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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, Trajkovski Vladimir, Tar Bolacali Edanur, Lynch Louise, Burke Eilish, McMahon Martin
Аннотация
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.