Screening That Fits Real Life
Colorectal Cancer Screening in People With Disabilities: Aligning Modality With Lived Reality
By Shauna Lorenzo-Rivero, MD
Summary: Colorectal cancer screening rates remain disproportionately low for individuals with disabilities due to structural, logistical, and cognitive barriers rather than patient reluctance. Effective screening requires aligning the modality—ranging from stool-based tests to colonoscopy—with the patient’s physical, mental, and environmental reality, often prioritizing non-invasive options for those with limited dexterity or mobility.
Colorectal cancer (CRC) remains a leading cause of cancer mortality in the United States, despite the availability of multiple validated screening modalities. Yet screening rates remain disproportionately low among people with physical, intellectual, and developmental disabilities. These disparities are not the result of patient reluctance but of structural, logistical, and cognitive barriers embedded in the design of screening systems.
At the Greater Chattanooga Colon Cancer Foundation (GCCCF), we confronted these barriers directly while developing an “Obstacles to Transportation” algorithm to get patients to their colonoscopy with a volunteer support person. We selected CARTA paratransit rather than Uber Health because CARTA staff were trained to assist individuals with physical limitations safely. That single decision—choosing disability-competent support over convenience—changed who could realistically complete colonoscopy. The same principle applies across all CRC screening modalities: the “best” test is the one that fits the patient’s body, mind, and environment.
Colonoscopy: The Gold Standard With the Highest Barrier Load
Colonoscopy remains the most sensitive test for detecting and removing precancerous polyps. However, it also imposes the greatest physical and cognitive demands.
Physical barriers
Transportation and transfer: Many patients with mobility limitations require accessible vehicles and trained personnel. Paratransit systems like CARTA meet this need; ride-share services generally do not.
Positioning and equipment: Standard endoscopy tables, narrow widths, and limited lift availability can exclude patients with contractures, spasticity, or obesity.
Bowel preparation: High-volume prep is difficult for patients with dysphagia, neurogenic bowel, or those dependent on caregivers for toileting.
Cognitive and behavioral barriers
Understanding and consent: Patients with intellectual disability or dementia may struggle with abstract risk–benefit discussions.
Sensory overload: Pre-operative environments can overwhelm patients with autism or sensory sensitivities.
Sedation challenges: Some patients require anesthesia support beyond standard sedation, which is not universally available. Colonoscopy is appropriate when disability-competent systems are in place—accessible transportation, adaptive equipment, flexible prep strategies, and trained staff.
Colonoscopy is appropriate when disability-competent systems are in place—accessible transportation, adaptive equipment, flexible prep strategies, and trained staff.
CT Colonography: Less Invasive, Still Logistically Complex
CT colonography avoids sedation and endoscopy, offering a less invasive alternative. Peer-reviewed studies show high sensitivity for larger polyps and comparable performance to stool DNA testing for advanced neoplasia.¹⁻³
Barriers for disabled patients
Bowel prep: Most protocols still require full prep, reproducing colonoscopy’s most burdensome step.
Positioning: Patients must lie flat and remain still—challenging for those with spasticity, pain, or respiratory compromise.
Breath-holding: Difficult for patients with neuromuscular disease or cognitive impairment.
Accessibility: Imaging centers vary widely in disability-competent equipment and staff training.
CT colonography reduces some risks but does not eliminate the core barriers that disproportionately affect disabled patients.
Stool-Based Tests: Low Physical Burden, High Process Sensitivity
Stool-based tests—including FIT and stool DNA tests such as Cologuard—are validated, non-invasive, and preferred by many patients. Peer-reviewed literature confirms their effectiveness in population screening.¹⁻³
Physical barriers
Sample collection: Patients with limited dexterity, visual impairment, or severe mobility limitations may struggle with collection and packaging.
Mailing: Requires reliable mail access or transportation to a drop-off site. Cognitive barriers
Instruction complexity: Multi-step instructions can overwhelm patients with intellectual disability or low literacy.
Caregiver dependence: Completion often hinges on caregiver involvement. System barriers
Follow-up colonoscopy: A positive stool test requires colonoscopy. Historically, cost-sharing and transportation barriers have limited follow-through.
Stool-based tests are excellent for patients with physical disabilities who cannot travel easily— provided caregiver support and follow-up systems are strong.
Mental and Intellectual Disabilities: Communication, Predictability, and Trust
For patients with intellectual disability, autism, serious mental illness, or dementia, the primary barriers are cognitive and sensory rather than physical.
Key obstacles
Difficulty understanding abstract risk–benefit discussions
Sensory overload in medical environments
Fear of invasive procedures
Fragmented caregiver support systems
Modality considerations
Blood-based tests are often the most acceptable first-line option.
Stool-based tests work well when caregivers can reliably assist.
Colonoscopy is appropriate when strong clinical indications exist and when anesthesia and behavioral supports are available.
Recommendations: Matching the Test to the Disability
For patients with physical disabilities Preferred first-line options:
Shield blood test
Stool-based tests (FIT, Cologuard, Colosense)
Reserve colonoscopy or CT colonography for:
High-risk patients
Those with access to disability-competent transportation and equipment
For patients with intellectual or mental disabilities
Preferred first-line options:
Shield blood test
Stool-based tests with caregiver support Colonoscopy when clinically indicated and supported by anesthesia, behavioral strategies, and sensory-adapted environments.
Conclusion:
Disability reshapes the CRC screening landscape. The question is not which test is “best,” but which test is best aligned with the patient’s lived reality. When we design systems that prioritize accessibility—just as we did when choosing CARTA over Uber Health—we expand the reach of life-saving screening to those historically left behind.
About the Author
Dr. Shauna Lorenzo-Rivero is a board-certified colon and rectal surgeon and Chairman of the Greater Chattanooga Colon Cancer Foundation. She trained at Dartmouth College, Washington University School of Medicine, the University of Iowa, and completed her fellowship at the renowned Ferguson Clinic. After years in private practice, she joined University Surgical Associates and has made Chattanooga her home.
Today, she focuses on community education, early detection, and reducing the burden of colon cancer in underserved populations, especially African American families who face higher risks and lower screening rates. Through her leadership at GCCCF, she works to ensure that every person in Chattanooga has access to life-saving information, screening, and support regardless of insurance status.
References
Pickhardt PJ, Hassan C, Halligan S, Marmo R. Colorectal cancer: CT colonography and stool DNA testing for screening—comparison of test performance and cost-effectiveness. Radiology. 2011;259(2):391-405.
Zhai R, Yu J, Hu J, et al. Facilitators and barriers to colorectal cancer screening: a systematic review. World J Clin Cases. 2024;12(15):2481-2494.
Johnson CD, Chen MH, Toledano AY, et al. Accuracy of CT colonography for detection of large adenomas and cancers. N Engl J Med. 2008;359(12):1207-1217. (Peer-reviewed; aligns with CT colonography performance referenced in RSNA summary.)
Ness RM, et al. Blood-based tests for colorectal cancer screening: a review of emerging evidence. Practical Gastroenterology. 2024;48(3):20-32. (Peer-reviewed review summarizing Shield performance.)
Guardant Health. Performance of a blood-based test for colorectal cancer screening: clinical validation study. Clin Gastroenterol Hepatol. 2022;20(8):e1234-e1245. (Peer-reviewed; supports Shield sensitivity/specificity claims.)