When it comes to prostate cancer, patients sometimes need to make an important decision: Go with radical surgery or opt for a watch-and-wait approach? But what if the patient doesn't understand basic medical terms?
A new Emory University study reveals a severe lack of understanding of the most basic medical terms, including "incontinence" and "urinary function."
That raises concerns over whether patients are equipped to make meaningful decisions about their health care. The results of the study - involving 109 patients at urology clinics at Grady Memorial Hospital in Atlanta and Emory University Hospital - are published in this month's issue of Cancer, a peer-reviewed journal of the American Cancer Society.
The participants agreed to answer questions about technical terms used in patient education materials that describe urinary, bowel and sexual function. The findings included the following: only 15 percent of the patients participating in the study understood the meaning of "incontinence;" less than a third understood "urinary function" and "bowel habits;" and less than half knew the meaning of the word "impotence."
"I was surprised by the magnitude of it, by just how poorly understand these terms are - these terms we use every single day with every single patient," said Dr. Viraj Master, a physician and researcher at Emory University's Winship Cancer Institute, also a lead investigator of the study. "We have our work cut out for us."
And, while most of the patients in the study were being seen by a doctor for a prostate-related health concern, only a paltry 5 percent understood the function of the prostate.
The Emory study involved low-income patients with a median reading level of a ninth-grader. But other studies done on health literacy suggest this is a widespread phenomenon, Master said. Ultimately, Master said, a poor understanding of the meaning of potential side effects and other medical conditions could lead to a patient making decision he may later regret.
Rich Lapin, vice president of the Georgia Prostate Cancer Coalition, an Atlanta-based nonprofit focused on raising awareness of prostate cancer and encouraging regular screenings to help detect prostate cancer in its earliest stages, said it's critical for doctors to create an environment where patients feel comfortable asking questions.
Lapin, a 66-year-old prostate cancer survivor who was diagnosed with the disease more than a decade ago, said it's also a good idea for patients to bring a loved one with them to doctor appointments to help take notes and ask follow-up questions. Lapin, who received his cancer diagnosis solo, said he wishes his wife had been with him to help him take in all of the information.
Still, Lapin said confusion over medical terms is only one barrier to going to the doctor. Lapin said the biggest hurdle is getting men to simply go to the doctor in the first place. Lapin said men are often so fearful or so averse to going to the doctor for prostate cancer screening, which typically involves getting a digital rectum exam, they will put off getting the care they need.
"They worry it threatens their sense of masculinity," he said.
Master agreed that the trepidation men experience is "very real."
"And the onus is on us, once that patient comes to the doctor, we need to provide all of the necessary tools to facilitate understanding."
Going forward, Master said Emory and Winship are working on computer programs to help explain medical terms and procedures. The plan is for the information to be presented on a hand-held device that would allow patients to replay and review until the information is fully understand. Watching a video, he said, can be more effective than printed reading material. And, while he uses anatomical models during doctor's visits, he said doctors need to develop better tools.
"We need tools that go beyond the 1950s models," he said.
Working to make sure patients understand medical terms and conditions is also an area of concern at other hospitals.
Piedmont Healthcare is in the process of revamping its discharge protocol, which includes rewriting parts of the paperwork in more easy-to-understand language. Piedmont is also adding face-to-face time with patients and their caregivers as patients are discharged from the hospital to ensure that they understand the paperwork, their condition and what happens next in their care plan.
Distributed by MCT Information Services