Barriers in cancer screening for people with intellectual disabilities highlight need for tailored support

People with intellectual disabilities (ID) are significantly less likely to participate in population-based cancer screening than the general population, according to researchers from Radboudumc and the academic collaborative Intellectual Disability and Health.

The paper is published in The Lancet Public Health journal.

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

The researchers investigated the participation rate of individuals with ID in these population screening programs. The results, show that people with ID are much less likely to participate in these three population screenings than people without ID. Unfavorable outcomes were found at roughly the same rate in both groups. However, people with ID experienced more frequent difficulties during the screening or follow-up examinations.

Using data from nearly 200,000 people with ID, the researchers looked at who was invited to one or more population screenings between 2015 and 2021, how many of them participated and with what results. Then those outcomes were compared with people without ID. The results showed that people with ID were significantly less likely to participate in screenings for cervical cancer (45% vs. 68%), breast cancer (56% vs. 76%), and colon cancer (52% vs. 73%) compared to people without ID.

More frequent ambiguity

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

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

Better support needed

Based on these findings, the researchers argue for better alignment with the needs of people with ID. Project leader Dr. Maarten Cuypers adds,”There is a need for better support in decision-making about participation. There is also a need, where possible, to better adapt the implementation of screening to people with ID. Without additional effort, this group remains vulnerable to a worse prognosis with cancer.”

To support care providers in the ID sector in this, the Dutch Association of Intellectual Disability Physicians (NVAVG) is currently developing a guide on how to deal with population screening in people with ID. This will include the results from 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 better participation in population screening in the future.”

The RIVM, which coordinates 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 committed to making easily understandable information available, also for people with intellectual disabilities, for example through Steffie.nl. In addition, the RIVM is involved in the creation of the NVAVG’s guide to support the improvement of accessibility and the decision-making process surrounding participation in population screening.”