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!
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Filed under: Diagnosis, Management, Living with Prostate Cancer, Risk Tagged: | decision-making, grade, knowledge, level, web, site
Source: http://prostatecancerinfolink.net/2012/10/26/prostate-cancer-web-sites-for-the-reading-challenged/
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