Oncologists need to be aware of the readability level of the [patient education material they provide] and how much the patient will likely be able to understand from the information.
—Gopal Gupta, MD
Although 61% of Americans are going online to access health information,1 many of them may not understand what they find there, including information about prostate cancer treatment options. According to a new study published in The Journal of Urology,2 as many as 90 million Americans have literacy skills below a high school reading level. However, an examination by the study authors of 62 websites catering to prostate cancer and its treatment options found that only 3 were written below a 9th-grade reading level.
The result, said study senior author Gopal Gupta, MD, Instructor in Urology and Surgery, Loyola University Medical Center in Maywood, Illinois, is that patients with prostate cancer who have education levels below the 9th grade may be more likely to misunderstand the information they read about their cancer, jeopardizing access to their best treatment options and limiting their ability to participate in the shared decision-making process.
While the National Institutes of Health (NIH) recommends that physicians and health-care organizations use patient education material written at a 4th through 6th grade reading level, online health information, even at many common consumer medical sites such as WebMD, is often written well above those levels. In fact, Dr. Gupta and his colleagues found that even the American Urological Association Foundation’s website uses prostate cancer treatment information written above the 12th grade reading level, far beyond the literacy skills of many patients.
The ASCO Post recently talked with Dr. Gupta about the results of his study and what oncologists can do to help direct their patients with cancer to more accessible health material, both on the Internet and in print.
How did you find the websites you examined in your study?
First, we identified the three most common keywords from over 500 terms related to prostate cancer treatment options. They were “robotic prostatectomy,” “prostate cancer,” and “prostate cancer treatment.” Then we sorted through 270 websites from the top three search engines, excluding any that were non-English and not primarily text (such as YouTube videos). We also removed any sites that appeared as banner advertisements. The remaining 62 websites were then categorized by source, such as government, academic practice, nonacademic practice, commercial, nonprofit, news, and health.
To assess the readability of the sites, we used the Flesch-Kincaid grade level and the Flesch reading ease level. To our dismay, we found that only 3 of the 62 websites were written below a high school reading level.
Many Treatment Options
Why did you decide to undertake this study?
Prostate cancer is the most common cancer among men in the United States, and there are many treatment options. Our study stemmed from the realization that presenting so many options to patients often left them befuddled about what to do and left practitioners exhausted because they have to explain all the different options.
That led us to look for some way we could supplement these meetings using written materials that patients and their spouses could find online. They could print out these materials to read at their leisure. It was shocking to us that 95% of the websites we analyzed were written above the NIH recommended fourth to sixth grade reading level.
What are some of the ramifications of patients with prostate cancer not understanding the information they find online?
There are many ramifications. The number 1 goal of providing health information is to better inform patients about their disease and treatment options. One question is what if the different treatment options presented online have different levels of readability. Furthermore, what if there is a bias inherent in the writing? For example, if all options are equivalent in predicted outcome but the information is presented in numerical order, this may bias a patient’s ability to make an informed decision.
Let’s say that in an online discussion of the four treatment options for prostate cancer—active surveillance, robotic prostatectomy, radiation beam therapy, and radiation seed therapy—the material about active surveillance is written at a higher level of understanding then the section on surgery. That could influence the choice of patients reading the information.
In addition, the concept of active surveillance can be difficult to explain (and hard for the patient to understand). The idea of having cancer and not actively doing something about it is a tricky concept for many patients. They have to be willing to participate in ongoing surveillance and trust their physicians as well as the basic principle of having what appears to be a low-grade cancer that we will continue to watch so we can avoid the downside of committing to immediate therapy. But that’s a tough conversation.
Impact on Practice
Have your study findings changed the way you approach discussions with your patients with prostate cancer?
As physicians, our job is to do the right thing for our patients and support them in their decision-making process. I don’t want to confuse patients without even knowing it. I’m very careful about the supplemental reading material I hand out or the online resources I recommend to patients for further reading about their prostate cancer diagnosis. I generally use the National Comprehensive Cancer Network (NCCN) Guidelines for Patients (nccn.com), but even that information is written at a 7th to 8th grade reading level, so it is probably above the comprehension of some patients.
I’ve also instituted a multidisciplinary approach in my practice, whereby specific experts in radiotherapy, chemotherapy, and surgery present the different treatment options to the patient. So patients with newly diagnosed prostate cancer will meet separately with the surgeon, the radiation oncologist, and me. That way the patient can immediately contrast options, meet with the providers to ask questions, and make a better-informed decision.
Our study also found that patients with low-health literacy may not understand even commonly used words such as “erection” and “impotence.” In those cases, you need to use simpler terminology, or define terms as you use them.
What can oncologists do to help improve patient education?
One of the reasons we conducted this study is because there are four basic treatment options for certain low-risk prostate cancers. But unlike other cancers, where there are standard proven treatments and algorithms, in prostate cancer the options aren’t as clear-cut. They require a lot of decision-making on the patient’s part.
It is important for oncologists to examine what is in the patient education material they give out in their clinics and practices and on the websites they recommend. Oncologists need to be aware of the readability level of the material and how much the patient will likely be able to understand from the information. Hopefully, the material won’t confuse the patient and it will be helpful and unbiased.
We need to do a better job at advocating for appropriate literature for patients so they can not only make better-informed treatment decisions, but can also better understand what is happening to them as they go through recovery. n
Disclosure: Dr. Gupta reported no potential conflicts of interest.
1. Fox S: The social life of health information, 2011. Available at pewinternet.org/reports/2011/social-life-of-health-info/summary-of-findings. Accessed December 3, 2012.
2. Ellimoottil C, Polcari A, Kadlec A, et al: Readability of websites containing information about prostate cancer treatment options. J Urol 188:2171-2176, 2012.