Purpose: We performed a series of qualitative interviews among socioeconomically diverse primary care patients from two academic practices to assess the comprehension of underlying concepts and medical terminology employed in the process of shared decision making with a widely distributed colorectal cancer (CRC) screening decision aid.
Method: Based on prior interviews exploring prostate cancer screening among underserved patients with low literacy skills, we used a modified Delphi technique to identify where specific health literacy skills or knowledge are ascribed to patients referencing the CRC screening decision aid produced by the Foundation for Informed Medical Decision Making. In a series of phone and face-to-face interviews of men and women eligible for CRC screening, we used qualitative and mixed methodologies to compare what patients know and understand about CRC screening, to the proficiencies assumed by the decision aid. We characterized differences in five empirical health literacy domains: 1) reading skills 2) numeracy skills 3) anatomic knowledge 4) comprehension of common medical terms and 5) basic cancer biology concepts.
Result: We report preliminary results from the first 24 interviews of a planned, ongoing total accrual of 70 patients. Patients’ median age was 53. There were 29% of patients with less than a high school education and 32% of patients self-identified as minority race. Although most patients had adequate numeracy skills, an estimated 33% (15, 52) would be challenged by the reading skills required in the decision aid. Some misunderstanding of colon function or anatomy was manifest even among the most well-educated patients. Most patients, 83% (68, 98), had not heard of any other CRC screening tests except for colonoscopy. Although 63% (43, 82) of patients could correctly describe “how the doctor tested stool for blood”, only 29% (11, 47) had heard of “fecal occult blood testing”. Cancer biology concepts were understood surprisingly well. Most patients reported that they preferred getting medical information from their physician. The request for using plainer, more accessible language for shared decision making was a recurring theme.
Conclusion: Patient decision aids may assume a level of health literacy that many patients do not possess. Few patients were familiar with CRC screening tests other than colonoscopy. Even among well-educated patients, anatomy and commonly used medical terms in CRC screening are frequently misunderstood.
Candidate for the Lee B. Lusted Student Prize Competition