Cancer- Understanding Prevention in Intellectual Disabilities


Gözüm S., Wells J.(Yürütücü), ASİ E.

TÜBİTAK - AB COST Projesi , 2022 - 2026

  • Proje Türü: TÜBİTAK - AB COST Projesi
  • Başlama Tarihi: Ekim 2022
  • Bitiş Tarihi: Ekim 2026

Proje Özeti

There is poor understanding of cancer prevention among people with intellectual disabilities. CUPID will establish a research agenda and knowledge base to improve this in the European Union and beyond. Among the European intellectual disabilities population, many cancer diagnoses are symptomatic presentations following on from behavioural distress or physical changes. Cancer deaths among this population occur up to 20 years earlier than the general population. Factors influencing unequal health status and premature death amongst people with intellectual disabilities warrant further investigation. Article 25 of the United Nations Convention on the Rights of People with Disabilities acknowledges their right to healthcare. The Council of Europe Disability Strategy 2017-2023 recognises health systems failure to engage with and include people with disabilities. Many external and internal factors influence healthcare engagement among this population resulting in long- term health consequences. External factors include diagnostic overshadowing, paternalism and cancer screening delays during the COVID-19 pandemic. For the person challenges with communication, cognitive ability and decision-making capacity influence healthcare engagement. It is timely to develop collaborative links with the EU research and service provider communities to reach consensus on addressing these challenges. CUPID establishs active working partnerships with academics, researchers, non-governmental organisations, carers, people with intellectual disabilities and policy makers. CUPID will establish a research agenda and exchange information regarding cancer prevention in the intellectual disability population. Short term scientific exchanges, training schools, conferences and seminars using a hybrid approach will explore highlighted issues. Other network funding streams will not support this kind of activity.