To Many Patients, “Clinical-ese” Might as Well Be Greek

Both the American College of Physicians and the American Urological Association this year issued new guidelines about prostate cancer screening that are remarkably similar: instead of reflexively ordering prostate-specific antigen tests for all male patients of a certain age, doctors should first discuss the pros and cons of screening with them.

That’s all well and good, but how can a patient give informed consent if he doesn’t know what “risk factor” means?

A recent study in the journal Cancer challenges the common assumption that everyone understands the basic terms used to discuss prostate health, terms clinicians “toss around so easily, so glibly,” says senior author Dr Viraj Master, an Emory urologist. Master’s study found a “severe lack of comprehension” among low-income inner-city men. 

Interviewers met face-to-face with 109 men 40 and older at two “safety net clinics,” for urology and radiation oncology, at Atlanta’s Grady Memorial Hospital. The interviewers assessed the patients’ comprehension of 28 technical terms describing urinary, bowel, and sexual function. The interviewers also tested the men’s ability to perform basic computational skills needed to understand the risks and benefits of medical interventions. And they quizzed the men on their knowledge of important anatomic structures related to prostate health.

Here are some of the study’s findings:
• Only 13% of the patients understood what “risk factor” meant.
• Most of the men (60%) couldn’t locate the prostate, and 97% couldn’t correctly identify its function. “It helps you have a good bowel movement,” said one.
• Only 30% of the men could correctly calculate both a fraction and a percentage.
• More than a quarter of the men confused urinary and bowel terms. For example, one said the rectum “expands your penis, makes it larger and firm.”

These men were not uneducated. On average, they had completed 13 years of schooling-thought to be more than the typical Grady Memorial patient-but read at a 9th grade level. “The lack of comprehension exhibited by our patients may be even more prominent if extended to the general population of Grady patients,” Master and his coauthors write.

Dr Kerry Kilbridge says that before she began to investigate men’s understanding of terms related to the prostate, “I didn’t really think of those words as medical terms.” Kilbridge, a Harvard medical oncologist, coauthored Master’s Cancer paper, which was spurred by a similar 2009 study she had led.

“Prostate terms are probably the acme of misunderstanding,” Master says. “Frankly, men’s genitourinary health is not something that’s discussed very often.” And when men do discuss it, they tend to use more, let's say, colorful  language than doctors and educational brochures and Web sites do. So to make sure patients understand, Kilbridge says, “You really have to talk in pretty graphic terms.”

She and Master are working on ways to narrow the doctor-patient communication gap. Ideally, they say, lay educators would lay the groundwork with patients before they meet with their doctor. “I think utilizing the power of audiovisual is really important,” says Master, who is conducting a pilot study of a video teaching tool with patients.

And in a study presented at last year’s meeting of the Society for Medical Decision-Making, Kilbridge “let patients chose their words for sexual, urinary, and bowel function, and then we used those words to do patient education.” By supplementing a standard decision aid about early-stage prostate cancer treatment with an explanation in colloquial terms, Kilbridge’s team greatly improved the men’s comprehension about side effects.

“Basically, patients don’t speak the same language that physicians do,” she says. “Physicians forget they need to be bilingual when they’re talking to patients.”