Perceptions of National Cancer Prevention Policies in Europe: A Survey of Organisations Supporting People with Intellectual Disabilities

Abstract

Background: People with intellectual disabilities, in comparison to the general population, face multiple health inequalities and poor health outcomes. Service organisations for people with intellectual disabilities are one of the key players in ensuring that people with intellectual disabilities have access to adequate healthcare. Methods: A cross-sectional web-based survey was implemented from 8 to 22 April 2025, focusing on organisations providing services to people with intellectual disabilities, with a peak response rate of 9%. The survey comprised 29 questions, split into three sections: general information, experience, and opinions on cancer prevention policy. Results: A total of 29 organisations from 14 upper-middle- and high-income European countries participated. Approximately 20% (n = 6) of organisations reported the existence of a cancer prevention policy in their country designed to address the needs of people with intellectual disabilities, with most considering them inadequate. Overall, 86.2% of organisations identified tailoring cancer prevention policy for people with intellectual disabilities to be of major importance. Respondents identified national government/ministries (n = 26, 90%), organisations for people with intellectual disabilities (n = 24, 82.8%), and research entities (n = 23, 79.3%) as the responsible stakeholders for implementing policy changes. Conclusions: Respondents expressed strong support for tailored policies, alongside support for a pan-European approach. From a policy perspective, findings support the critical need for policymakers to prioritise cancer prevention strategies, improve coordination, and ensure training and co-production with organisations supporting people with intellectual disabilities.

Affiliated Institutions

• Institute of Public Health of Vojvodina RS
• Collegium Medicum in Bydgoszcz PL
• Nicolaus Copernicus University PL
• Trinity College Dublin IE
• University of Maribor SI
• University of Novi Sad RS

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