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 f9S57E011621; Sun, 28 Oct 2001 01:07:14 -0400 (EDT) Date: Sun, 28 Oct 2001 01:07:14 -0400 (EDT) Message-Id: <MABBKFDHLFFKFFADLABNMENNCDAA.lpbml@pacbell.net> 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: lpbml <lpbml@pacbell.net> To: Multiple recipients of list <nifl-health@literacy.nifl.gov> Subject: [NIFL-HEALTH:3435] Re: Providers assessing literacy level-- W X-Listprocessor-Version: 6.0c -- ListProcessor by Anastasios Kotsikonas Content-transfer-encoding: 7BIT Content-type: text/plain; charset=iso-8859-1 X-Mailer: Microsoft Outlook IMO, Build 9.0.2416 (9.0.2910.0) Status: O Content-Length: 5152 Lines: 134 Your experience unfortunately is typical. You must know how to do the research and take it to the doctors with questions to make your own decisions. I am curious though, since I have had no problem with doctors spending the needed time and explanation about medical issues, if you have free reign and choice or if you are under an HMO? We took the journal articles with us to our visits and had the doctor explain his differing opinion if that is what it was. Or if something wasn't clear in an article, even if he concurred, we would ask for a further explanation or other sources to consult. We also selected physicians who knew us as people and a family, not just another chart number. I will admit, they are hard to come by; but still available if you're willing to do the research and not afraid to terminate the services of a practitioner who does not meet your requirements. A librarian friend of mine was offered and declined the flap procedure because of the high complication rate, including prolonged recovery, infection and death. She is also very educated, knew how to do her research and consultations, and made her decision based on those findings. Best wishes on your continued recovery. -----Original Message----- From: nifl-health@nifl.gov [mailto:nifl-health@nifl.gov]On Behalf Of Jeri Levesque Sent: Friday, October 26, 2001 10:30 AM To: Multiple recipients of list Subject: [NIFL-HEALTH:3429] Re: Providers assessing literacy level-- W 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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