Individuals with intellectual disabilities (ID) face significant barriers when it comes to participating in population-based cancer screening programs, a recent study published in The Lancet Public Health has found. Researchers from Radboudumc and the academic collaborative Intellectual Disability and Health examined the participation rates of people with ID in cervical, breast, and colon cancer screenings compared to the general population.
The study revealed that individuals with ID were much less likely to participate in these screenings, with participation rates significantly lower than those without ID. Despite similar rates of unfavorable outcomes in both groups, people with ID encountered more difficulties during the screening or follow-up processes. Results were often inconclusive for individuals with ID, leading to delays in further diagnosis and treatment.
Ph.D. candidate Amina Banda, the lead author of the study, emphasized the need for better alignment with the needs of people with ID in population screening programs. Project leader Dr. Maarten Cuypers highlighted the importance of providing support for decision-making and adapting screening procedures to accommodate individuals with ID.
In response to these findings, the Dutch Association of Intellectual Disability Physicians (NVAVG) is developing a guide to help care providers in the ID sector navigate population screening for individuals with ID. Dr. Esther Bakker-van Gijssel, chairman of the working group for the guide, stressed the importance of improving accessibility and decision-making processes surrounding participation in screenings.
The National Institute for Public Health and the Environment (RIVM), which oversees population screening in the Netherlands, supports efforts to enhance accessibility for individuals with ID. Project leader Karin Honig from the RIVM’s Center for Population Screening highlighted the importance of providing easily understandable information and supporting improved accessibility in population screening programs.
Overall, the study underscores the need for tailored support and better alignment with the needs of individuals with intellectual disabilities in cancer screening programs. By addressing these barriers and providing appropriate support, researchers hope to improve participation rates and outcomes for people with ID in population-based cancer screenings.
