Return-Path: <nifl-health@literacy.nifl.gov> Received: from literacy (localhost [127.0.0.1]) by literacy.nifl.gov (8.10.2/8.10.2) with SMTP id f9QHTm000771; Fri, 26 Oct 2001 13:29:48 -0400 (EDT) Date: Fri, 26 Oct 2001 13:29:48 -0400 (EDT) Message-Id: <3BD99E6E.8729D5CB@webster.edu> Errors-To: listowner@literacy.nifl.gov Reply-To: nifl-health@literacy.nifl.gov Originator: nifl-health@literacy.nifl.gov Sender: nifl-health@literacy.nifl.gov Precedence: bulk From: Jeri Levesque <levesqjr@webster.edu> To: Multiple recipients of list <nifl-health@literacy.nifl.gov> Subject: [NIFL-HEALTH:3429] Re: Providers assessing literacy level-- W X-Listprocessor-Version: 6.0c -- ListProcessor by Anastasios Kotsikonas Content-Transfer-Encoding: 7bit Content-Type: text/plain; charset=us-ascii; x-mac-type="54455854"; x-mac-creator="4D4F5353" X-Mailer: Mozilla 4.61 (Macintosh; I; PPC) Status: O Content-Length: 3689 Lines: 104 Jan and Others: Assessing patient's literacy needs has always been an interesting discussion. I discovered an interesting situation regarding Breast Cancer. As this is National Breast Cancer month, please allow me to broach the subject of patient decision making. After my fourth biopsy in 7 years I was confronted with choosing between treatment options which included a prophylactic bilateral mastectomy. The current practice for surgeons is to give patients information but not to direct the patient toward a treatment option. My surgeon told me that as an intelligent, well educated woman, it was my responsibility to research the disease and treatment options and then to return to him with questions and a decision regarding treatment. I am a reading specialist who defines comprehension as the process of creating meaning from print by bridging prior knowledge of a subject with new information. As a tenured university professor I have well honed research skills. However, reviewing articles from Medline and the gamut of cancer related web sites I finally surrendered to information overload. For every point regarding prophylactic bilateral mastectomies with TRAM flap reconstruction there is a counterpoint. I do not have adequate background knowledge to discern an author's bias or previous work in the field. I sought a second opinion and the practice of "patient makes the decision without particular surgeon guidance" held. Imagine trying to decide how to invest all of your retirement in the current stock market with a financial advisor who tells you to figure it out for yourself. My conclusion to have surgery was supported and I am now in my sixth week of recovery. A couple of health literacy lessons. First, the Internet based health issues Chat rooms provide a good forum for emotional support. The search engine allows one to zero in on specific questions and issues regarding cancer types, treatments, and recoveries. They are succinct discussions with relatively low levels of readability. Second; Y Me, Susan Komen, Sloan Kettering, Johns Hopkings, Cancernet and others have straightforward FAQ's that are handled by physicians. These are clearly cataloged and linked to other concerns. Most key vocabulary is hot linked to definitions and further explanations. The readability is higher but the FAQ's allow a standard paragraph per question. Third; patients can access medical journal abstracts and collect current information regarding treatment options including new studies such as the STAR Trials. This information is not intended for consumers but very informative to well educated readers. Bottom line; after weeks of research on the Internet I was most comfortable with one on one conversations with my two surgeons. I seriously question however how Jane Doe, a woman with an eighth grade reading ability could make a rational decision through print materials alone. I did find a health literacy project that bridged the gap. The day before my surgery I watched a video, Just Between Friends produced by Washington University funded by Susan Komen Foundation. This was a health literacy project that includes a small booklet on breast cancer and a FAQ video about options and recovery. I have to admit between the video and the booklet all the basis were covered to inform a woman to the point of asking her doctor good questions and choosing a treatment option. As we all know, patients need high touch human communication just as much as high tech health information sources. A toast to all of the pink ribbons, Jeri Levesque, Ed.D. Associate Professor, Webster University Director; Webster University Literacy Center St. Louis, MO
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