Barriers in cancer screening for people with intellectual disabilities emphasize the need for tailor -made support

People with intellectual disabilities (ID) are considerably less likely to participate in population -based cancer screening than the general population, according to researchers from Radboudumc and the academic cooperation reduction and health.

The paper is published in Lancet’s public health magazine.

People with ID often have a higher risk of health problems compared to others. Screening is therefore important. However, diseases are often detected later in this group, which leads to higher mortality rates. Population reduction is designed for early detection of cervical, breast and colon cancer.

The researchers investigated the participation rate of people with ID in these population -confusing programs. The results show that people with ID have much less chance of participating in these three population consumptions than people without ID. Unfavorable results were found about the same pace in both groups. However, people with ID experienced more frequent difficulties during the screening or follow-up exams.

With the help of data from nearly 200,000 people with ID, the researchers looked at who was invited to one or more population differences between 2015 and 2021, how many of them participated and with what results. Then those results were compared with people without id. The results showed that people with ID had a significant chance of participating in screening for cervical cancer (45% versus 68%), breast cancer (56% versus 76%) and colon cancer (52% versus 73%) compared to people without ID.

More often ambiguity

Moreover, the researchers discovered that the results were more often decisive in people with ID, or that the procedure could not be performed properly. When testing the follow-up was needed, people with ID were less likely to participate. This can lead to delays in further diagnosis and treatment or indicate that insufficient thought has been given in advance to the consequences of a possible unfavorable result.

Ph.D. Candidate Amina Banda, the first author of the newspaper, says: “Our results show that population screening is not properly adapted to the needs of people with intellectual disabilities. It is not just about participation, but also the accessibility of the procedure itself and the decision -making about participation.”

Need better support

Based on these findings, the researchers argue for better coordination with the needs of people with ID. Project leader Dr. Maarten Cuypers adds: “There is a need for better support with decision -making about participation. There is also a need to use the implementation of screening with ID, to adjust the implementation of screening. Without extra effort, this group remains vulnerable for a worse cancer prognosis.”

To support health care providers in the ID sector in this, the Dutch Association of Intellectual Disability Physicians (NVAVG) is currently developing a guide about how to deal with population research in people with ID. This includes the results of this study.

According to the chairman of the working group for this guide, Dr. Esther Bakker-van Gijssel: “These results show the usefulness and necessity of the guide that is now being developed. We hope that this guide will contribute to a better participation in population education in the future.”

The RIVM, which coordinates the population screening in the Netherlands, endorses the importance of improved accessibility. Project leader Karin Honig of the Center for Population screening at RIVM says: “The RIVM is dedicated to easily understand information, also for people with intellectual disabilities, for example via Steffie.nl. Moreover, the RIVM is involved in creating the NVAVG’s Guide to support the improvement of the population and the decision -making process.”