Prostate cancer web sites for the “reading challenged”

A new paper in the Journal of Urology has criticized most prostate cancer web sites written for patients because they are not written at an 8th or 9th grade reading skill level (a skill level considered to be available to most American males).

Now this paper by Ellimootil et al. certainly has a point. Baseline information about prostate cancer certainly does need to be easily accessible for people with reading skill levels that are lower than high-school graduation grade. However, the associated implication that web sites providing large amounts of information for patients that do not meet that criterion are in some way unacceptable is at best naive.

The “New” Prostate Cancer InfoLink never set out to be focused on the needs of people with relatively low reading skills. We have always focused the content of this web site on those who might reasonably have been expected to graduate from high school and — furthermore — we have never expected to write all the content on this site at that level. Why? Because our goal is to help people to learn over time.

Like many disorders, prostate cancer is an extremely complex disease. The rationale for selecting one form of management over another includes scientific, medical, emotional, and cultural components (in different degrees for different people). It is ridiculous to think that such issues can all be explained for everyone at an 8th grade reading level. Just as men and women with low reading skills may learn in ways that are less text-based (e.g., through video materials as opposed to text), men and women with college level reading skills may want to seek out material that is based on the presumption of a higher set of reading skills.

The problem is that most baseline information about prostate cancer is actually not conducive to making good decisions about prostate cancer diagnosis and management. Here are some truly baseline statements about prostate cancer presented at am 8th grade reading level:

  • We don’t know whether testing every man of 50 years or older for risk of prostate cancer is a good idea or not.
  • There are four commonly used ways to manage early stage prostate cancer, but we don’t know which one is most appropriate for any well-characterized, individual patient.
  • A measure called the Gleason score is used to measure how aggressive your prostate cancer might be.
  • The prostate is a walnut-sized gland in men, found just below the bladder.
  • 70 percent of men who are 70 years old have some prostate cancer in their prostates, but most of them will not die from having such cancer, even if they never get any treatment.

All of these baseline statements are the absolute truth. Most of them are going to be of almost no help at all to a 65-year-old man with an 8th grade set of reading skills who needs help in deciding what to do about a diagnosis of T1c, Gleason 3 + 3, when he has a PSA of 3.2 and one of 12 biopsy cores contains 5 percent cancer.

Indeed, Prostate Cancer International could very easily put up a web site that provided baseline information about prostate cancer at an 8th grade reading level. However, we have no idea at all how to make that site helpful for men (or women) who really have 8th grade reading skills, because the language of good risk-based decision making is premised on certain other educational skills. Can we tell someone that they can choose between four different types of treatment in 8th grade language? Of course we can. Can we tell them how to think about and distinguish between the risks and benefits of those treatment options in a way that will allow them to come to the best possible decision for them in the same 8th grade language? Frankly, no. We can’t. That would probably take an hour-long conversation.

Would Prostate Cancer International like to be able to develop, build, and appropriately test a web-based system that really did help people with lower-level reading skills come to the very best possible decisions about how to manage their prostate cancer? Sure we would! Do we have the capabilities and resources to build such a site? We should be so lucky.  Such a site would require sophisticated video capabilities and a whole series of videogame-like decision technology tools. Could it be done? We suspect it could … but it wouldn’t be able to replace what The “New” Prostate Cancer InfoLink does, even if we could build it. And maintaining it over time might easily cost a million dollars a year or more!

13 Responses

  1. Actually, I have found your information very good. Probably if you only had reading skills at year 8/9 level you wouldn’t have a computer anyway as that would be more difficult to negotiate and you would still have to depend on information your health service offered — which is often not very helpful. I only have year 10 education. I have no trouble with understanding your info.

    Keep up your good work — someone might not like what you are doing, but I know you are trying to help. Being diagnosed with any cancer is very stressful for all concerned.

  2. Sitemaster: Forget those guys. You are doing a fantastic job.

  3. The sitemaster’s comments here are right-on. Nice assessment.

    A very different view of what is good and what is not about prostate cancer information on the Internet is “in press” in Urologic Oncology. That paper should be available on line in the next couple of weeks.

  4. Please don’t dumb down your site. If I wanted to read about prostate cancer at an eighth grade level or below, there are plenty of other sites I can visit (without mentioning names). I have a law degree and a specialist certificate, and I am looking for insightful and sophisticated analysis and comment that you provide to your readers on this site. Judging from the responses your readers post on this site, I know there are many other professionals and highly educated, whether self-taught or traditionally schooled, subscribers to the InfoLink. Doctors do not read, think, or speak at the eighth grade level. We patients can’t communicate well with or completely understand what our doctors are telling us, or make informed decisions, unless we know the medical terminology and underlying reasons for prescribed diagnosis and treatment, however technical they may be. Thanks Sitemaster for keeping us informed.


  5. Thanks for the feedback folks … and don’t worry, I have no intention of “dumbing down” the InfoLink. I’m more interested in helping to keep everyone “wised up”!

  6. Best site I know. I can express myself as I like and not be called an elitist for doing so. Indeed, I’m learning over time from this site. So just keep it up, even if I go on and on about stuff like “non-linear HDR brachytherapy boost” (I’ll explain the equation for that sometime). All great stuff, interesting whether I live or die from prostate cancer.

  7. This website has brought me knowledge, confidence, and hope. It’s also brought to me a great friend. Actually a few great friends.

  8. Statistical reporting can be confusing, especially when one reads of various measures of probability. We often see statistical acronyms such as HR, OR, or RR utilized in reporting study results, but we are unable to locate any simple explanations of what they mean or how they differ from each other on this site.

  9. Dear RobC:

    Thanks for the feedback … I shall see what I can do to help with that in the near future.

  10. Dear Sitemaster:

    Your website does not try, nor should it try, to be all things to all people. It is an invaluable service for the readers it tries to serve. There is likely a need for what the article in the Journal of Urology advocates, but it is not your role to try to provide it. Let them provide the service they recommend, or arrange for it to be provided, if they feel that such need is not being met. Please do not change an thing about your website and ignore the detractors.

  11. “70 percent of men who are 70 years old have some prostate cancer in their prostates, but most of them will not die from having such cancer”

    70 percent? I’ve been led to believe it was about 50 percent by the age of 80. Great website BTW, regardless of the reading level.

  12. The PC InfoLink is a great site. Keep up the great work. I have learned a lot from this site … perhaps too much.

  13. Different people have projected slightly different results over the years. However, the most accurate estimate that I am aware of was one suggesting that between 65 and 70 percent of men would be found — at autopsy — to have some amount of cancer in their prostate by age 70.

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