Identifying Barriers to Colorectal Cancer Screening for People With IDD

Colorectal cancer (CRC) screening saves lives through early detection, yet people with intellectual and developmental disabilities (IDD) continue to face significant disparities in access and care.1 A new study from Austria explored caregiver perspectives, revealing low awareness of CRC risks and symptoms, systemic barriers to health care access, and the urgent need for disability-inclusive screening practices.

The study is published in the Disability and Health Journal.

New research highlights caregiver perspectives to improve colorectal cancer screening access for individuals with intellectual and developmental disabilities. | Image credit: AnnaStills - stock.adobe.com

“The findings emphasize the significance of clinicians’ and health care facilities’ familiarity with individuals with IDD in promoting CRC screening participation,” wrote the researchers of the study. “Caregivers reported that positive relationships with health care providers and prior positive experiences were essential in encouraging participation.”

IDD are a group of lifelong conditions that begin during the developmental period and affect how a person thinks, learns, moves, communicates, and interacts with others.2 Although all intellectual disabilities are developmental, not all developmental disabilities are intellectual. Common examples include autism spectrum disorder, Down syndrome, cerebral palsy, and fragile X syndrome. Because IDD encompasses a wide range of needs and abilities, individualized and comprehensive care is essential to support health, independence, and quality of life.

The study used a qualitative design to capture caregiver perspectives on CRC screening for individuals with IDD.1 Semistructured interviews were conducted with 13 caregivers (mean age, 45 years; n = 8 women) living in Austria. To complement the interviews, caregivers completed a modified version of the Bowel Cancer Awareness Measure (CAM) questionnaire, which assessed their knowledge of CRC symptoms, risk factors, and confidence in recognizing signs of disease.

The interview transcripts were analyzed, in which the researchers identified recurring patterns and themes related to barriers and facilitators of CRC screening in this population.

Findings from the study revealed substantial gaps in caregiver knowledge and confidence regarding CRC. Results from the modified CAM showed limited awareness of CRC symptoms and risk factors, with caregivers reporting low self-confidence in detecting potential warning signs.

Additionally, the interviews identified 4 major themes: the need for more inclusive health care access, including clinician expertise, health education, and supportive environments; IDD-specific challenges such as communication barriers, reliance on routines, and the impact of comorbidities; the pivotal role of caregivers in facilitating screening and empowering individuals with IDD; and the persistence of stigma and social segregation, which reinforce health care inequities.

However, the researchers acknowledged several limitations. This study was limited by its focus on professional caregivers, reducing generalizability to family caregivers who may face different challenges and roles. Nonetheless, the researchers emphasized that professional perspectives are valuable given their central role in supported living settings. Another limitation was the absence of voices from people with IDD themselves, underscoring the need for future research to include both diverse caregiver types and individuals with IDD to better capture screening experiences.

Despite these limitations, the researchers believe the findings underscore how systemic shortcomings and caregiver knowledge gaps contribute to lower CRC screening rates among individuals with IDD.

“Our findings emphasize the critical role of caregiver education, accessible communication materials, and disability-sensitive health care environments in promoting CRC screening participation,” wrote the researchers. “In addition, educational interventions targeting both caregivers and people with IDD are essential to increase awareness, promote proactive health behaviors, and encourage participation in screening programs.”

References

1. Zeilinger EL, Wagner T, Fuchs A, et al. Healthcare disparities in colorectal cancer prevention for people with intellectual and developmental disabilities: a caregiver perspective. Disabil Health J. Published online September 16, 2025. doi:10.1016/j.dhjo.2025.101967

2. What is an IDD? University of Rochester Medical Center. July 11, 2024. Accessed September 22, 2025. https://www.urmc.rochester.edu/news/publications/health-matters/intellectual-developmental-disabilities