Advancing a Universal European Cancer Prevention Methodology for People With Intellectual Disability: Findings From CUPID Workshops in Ireland and Türkiye

Abstract

Background

People with intellectual disability have higher rates of cancer mortality than the general population. Cancer prevention programmes and screenings are recommended in adults, including those with intellectual disability. The opinions of relevant parties are important to ensure that people with intellectual disability can achieve equity in cancer outcomes. The aim of this paper is to report the findings of two workshops held in Ireland and Türkiye in 2023, which identified key issues affecting prevention, diagnosis and management of cancer in people with intellectual disability.

Methods

Researchers, practitioners, policymakers and other stakeholders with a role in cancer prevention programmes or cancer care (n = 44) participated in ‘World Café’ workshop meetings in Dublin and Ankara. The findings were synthesised under the Dahlgren and Whitehead (1991) Social Determinants of Health framework.

Results

Both workshops identified that people with intellectual disability face challenges including: limited available cancer data in this population, health issues overshadowing cancer diagnosis, and social barriers such as low health literacy. Involving families, professionals and promoting self-advocacy, while tailoring health services with inclusive decision making were prominent themes in both workshops as solutions. Research and person-centered healthcare were identified as critical for developing effective cancer prevention programmes.

Conclusion

For people with intellectual disability to benefit from effective cancer prevention programmes, reasonable adjustments must be made by policymakers, health institutions, primary healthcare professionals and non-government organisations, and research evidence must underpin decisions.